Halfway between Home and the Northern Beaches


The Saturday started off with a vibe of foreboding. We had errands to run at the local shops, and my back pain was a 20/10. It was so bad that I had to take one of my night-time medications whilst I was out, just to cope with the travel back home. I couldn’t have walked another step without it. Back home, I had a bath, and rubbed every liniment I owned onto my spine. I zapped my back, braced it, and would have chanted had it promised to help. I had no time for this nonsense! We were all packed to go see our dear friends on the Northern Beaches, and I wasn’t going to let anything stop us. My left kidney is twice as big as the right, and my spine is putting pressure on it, and other organs. My spinal canal is so narrow that they can’t loop wires up it to fit a spinal cord stimulator. Still, I press on. I have to ensure that my determination at the very least matches the force of the nerves being crushed. Yay! we made it onto the bus toward the station. I bit my lip every time we went over a bump, to the point that the inside of my mouth started bleeding. The train came on time, but then stopped abruptly at regular intervals. Apparently, the Vivid festival had caused public transport chaos. I started to feel anxious, knowing that I only had a finite amount of time before the pain ramped up again. I wanted to be safely encased in our friend’s home when it did.

The train stopped before Circular Quay and we were told that we couldn’t proceed for a while. Thirty minutes later, we rolled into Wynyard station. We needed to get the B-Line bus to the Northern Beaches, and there was nobody around to tell us where to go. We wandered the perimeter outside the station, and missed the first bus. My confusion grew, as the pain ramped up. Taking deep breaths hurt, as did trying to correct my posture. My right leg went from under me, leaving me with one functional leg, a walking stick and suitcase. Dismayed, I thought about returning home. I knew I would feel worse if I abandoned the visit we had all been looking forward to. I was halfway between home and our friend’s. Exhausted, we hopped on the next bus. I was climbing the walls in pain, and there were no seats. My daughter watched as commuters got off, and was on her way to secure a seat for me when a guy carrying a case of beer pushed past and sat down. She was having none of it, and demanded that he get up; that her mother needed the seat more than his beer!

An hour passed, and when we alighted, our friends were waiting. We were encased in hugs and love, and fed a curried vegetable pie. We listened to the Beatles and the next day, went to the beach. If we hadn’t gone, I would have felt sad at what the never-ending pain has taken from me. I would have felt awful for my daughter and our friends, who would have been understanding, but nonetheless…I would have missed the last hot day before winter curled it’s icy fingers around Sydney. I would have missed so much. Beauty, love and art… That is what makes life bearable. Particularly if you are going out of your mind with pain.

Naked Bike Ride Sydney, Parrots and Friends


As a result of a recent slip and fall, I have had to take more pain medication for my spine.   Come Friday, I was hunched over my toilet, continually throwing up (this medication can interfere with the nausea centre of the brain). As a result, I missed seeing my daughter sing at her Highschool’s talent quest. It was the end to a stellar week, which saw us being notified that our darling little home was being sold. We are hoping with all our hearts that an investor buys it, and we are able to stay. Saturday was spent eating dry toast and apple to settle my stomach, and resting in bed. That evening, my girl and I watched a very silly movie, and laughed until tears streamed down our faces.

We had arranged to meet friends on Sunday in the city, and there was no way that I was going to cancel. We all did IVF together, ending up with daughters. We hadn’t seen each other for the longest time, life getting in the way. It were as though no time had passed, as we hugged and caught up. IVF had taken a lot out of us, but it had also given us an inner resilience. Boy, have we needed it!

Strolling along, we came across a very sweet man, who was walking his three dogs and his Eclectus parrot. The girls were invited to hold him, much to their delight!

This gorgeous boy is named Apollo, and you can follow him and his family on Instagram.

Light exuded from Apollo’s dad; he was one of those people of whom you leave lighter and much happier.

We had Italian ice-cream for brunch, then indulged in a gorgeous Earl Grey and rose donut, baked fresh. A long walk was in order afterward, and we found an eatery, where I ordered a zucchini flower and plate of Brussels sprouts, pan-fried in balsamic vinegar. Surprisingly, my friends asked that the surplus be put in a container for me to take home,  and were more than a little reluctant to finish them off!

The girls paddled in the harbour, and as we reclined at a nearby park, we were surprised to have the Naked Bike Ride, Sydney, stream past! A helpful fellow at the front, announced to the gawkers that they were indeed nude riders, as if we couldn’t figure it out for ourselves! I admired their chutzpah, and the whimsy of it all. Such a random event to come across! It certainly made everyone smile!

At the end of the day, I was tired and sore, but no more than I would have been had I stayed home. In fact, I would have been worse off. I wouldn’t have seen my lifelong friends, watched my daughter have fun, met a very kind man with his canine and bird family, eaten glorious food and seen the naked bike ride. I wouldn’t have been embraced by my glorious city. I love that I can go into the city depleted, and come back retrieved.

Happy Birthday, Raphie!


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The anniversary of my fall happened recently. I consider the date to be my actual birthday. It could have been the end date between the dash, stating when I was born and when I died. If he had his way, it would have been. I have done everything I could think of to get through this particular day. I recall one year, I visited a dentist, and wept uncontrollably in the middle of Bondi Junction afterward. It was only when I looked at a newspaper, that I realized it was the anniversary of the fall. It convinced me that we have a powerful subconscious reaction to anniversaries, even if we don’t consciously dwell on them. This year, I took my daughter to lessons by a beach. On the bus, a brilliant stream of sunshine pierced through the windows, bathing me with soothing honey and saffron light. I closed my eyes and smiled, just as I had done the morning after the fall. Sunlight had broken through the clouds, and reached its honeyed fingers through the hospital window. Tears poured down my face at the sensation.

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I sat on the beach whilst waiting for my daughter and watched the waves crash in and then be pulled back. I was asked to hold close the following in the aftermath of my fall; ‘It came to pass…not to stay.’ For years I had imagined the waves crashing in, and then receding, taking with them all the challenges and pain. It was a marvellous saying, and an inspired piece of imagery.

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There were many ways I could have died that particular night, and he spoke aloud all the possibilities. I was strangled into unconsciousness at one point, before being pushed after I regained consciousness. I was then dragged across the ground, my survival having been an affront to him. The people on the waterfront looked at me curiously as I grinned maniacally from sheer joy, incredulous that I am still here. I talked to strangers, and patted little dogs wearing winter coats. I pulled out my key chain; I had found the perfect reminder for this date.

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I spent the rest of the evening looking through old scans, deciding what to take to my appointment at a pain clinic. I was of course, asked what had happened, and my throat grew dry as I revisited the trauma, trying to provide a recap in an hour. It is a saga that goes on, year after year. It demands time spent in surgeries and in surgery. Doctor’s surgeries tend to have the same inane and dated sporting, golfing, automobile and real estate literature, though if one is lucky, you may come across an old Reader’s Digest. I find it all laborious and tiring, and frankly can think of a million better uses of my time. However, I have an eleven year old daughter to whom I am the epicentre of her busy world, and I need to be on my game. I have to think of the future, and all I want to do with this kid. Spending time and money to maintain the wonder that is this vessel; well, it has to be a priority.  On a positive note, I have reached the Medicare Safety Net for the year! Go me! My daughter and I were having a girl’s night recently, and she tried to teach me some of her dance moves. She did so slowly, and we were in fits of laughter at my uncoordinated efforts, until I fell to the floor in pain. She kept apologizing and my heart broke. It is always there, demanding to be acknowledged. Each time I require my girl to do things I can’t do without extreme pain. Each time I have to explain how I was injured.

After my daughter bid me goodnight, I did what I do most years on the anniversary. I poured a glass of red wine, lit a candle and wished myself a happy birthday. It is always a birthday party for one. That bitterly cold evening, I imagined I was covered in a blanket, a pillow underneath my head. I imagined I was safe. I sipped my wine, then blew out the candle. I tucked myself in, and fell asleep. Another year passed.

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Spice Alley, White Rabbit Gallery and Neurosurgeons


Last week, I had the distinct pleasure of meeting my new neurosurgeon. Indeed it was a privilege, to meet such a humble and kind man. I presented a selection of my favourite scans from the past two decades, and as he studied them, he asked how on earth I had managed to inflict such damage. I tell you, after a lifetime of answering this question, you get quite nonchalant and so I muttered something about a bad man, my falling, and things of that ilk. I should have just brought him a copy of my book. Once he was over the shock of that discovery, he examined my head, neck and shoulders, all of which contorted in pain. I was booked in for nerve blocks and associated tests, and bid him farewell. My morning had required me to be a patient, vulnerable and hurting. The following part of the day would see me reclaim who I truly am, which is somebody who gets transported by beauty.

My daughter and I took off on a grand adventure, firstly to the White Rabbit Gallery at Chippendale, a magnificent space that used to be a luxury car showroom. The exhibition The Sleeper Awakes had started that day, and we were so entranced by the colours and symbolism that we forgot to take photos! It would have seemed almost rude to have not been in the moment. Trust me, if ever you are in the city, it’s worth a visit! I did however, manage a snap of the glorious tea room. The best cages are empty ones; beautiful in their emptiness.

We walked with our lovely friends to Spice Alley     at around 5pm, before it got busy. There was a wild variety of vendors, and the difficulty was deciding! There was plenty for a vegetarian like myself to choose from. I settled on the best vegetarian fried rice I have ever had! The heady spices were combined in such a way as to delight the taste buds. As we ate and drunk our bubble tea (and wine), we talked about everything from Nikola Tesla to Facebook, movies and authors.

When we boarded the train for home, I felt exhilarated, as one does at the end of a fruitful and satisfying day. I was exhausted and in pain, yes, but the over-riding emotion was gratitude. Gratitude for caring specialists, good friends, art galleries, delicious food, a new hangout and a happy child. My body feels frail; in need of reconstruction, and the pain is merciless. I was a patient, scans in hand. For the most part, I was still Raphaela, an irrepressible spirit who will not have her life dimmed. You can be both, and balance it well. The next day, I was in bed, but never mind. Last Friday, I was both a patient and healed.

Coping with Chronic Pain


Some of my friends are in horrific pain from long-standing injuries. I have watched their struggles and bravery in absolute awe, and have been suprised at times when they ask me how the hell I manage. I reply that I could inquire the same of them! This past year, I had referals to see a neurosurgeon, urologist and attend a pain clinic. Have I been? The answer is no. I couldnt afford the time, which is a reason high on the list. Home schooling my daughter and attempting to finish a book has seen me beg for leave. Just as I feared I wouldnt be able to prolong what shall need to be done, I found I could get through. I want to wait until my daughter is a little older, until more structures are in place, both financially and otherwise. I have a remarkable friend who is in the process of having a neuro stimulator installed, and this may well be where I am heading. In the meantime, this is what I do to cope.

  1. Hot shower first thing in the morning. I have a seat in the shower, and let the heat spray on my spine. I then apply a mixture of essential oils (such as Wintergreen),  or a liniment to my spine.
  2. I use a back brace, which supports my abdomen and lower spine. It is extraordinary, the amount of support this gives. I got fitted at a medical supply store.
  3. Whenever I am sitting, I use a lumbar roll cushion in the small of my back to provide support. If I didn’t have this, I would need to lay down more than I do already!
  4. To support my spine and my kidneys, I drink a lot of water and herb tea each day. It is particularly important as I self-catheterize.
  5. I try to walk at least thirty minutes each day, or work with weights at home.
  6. I spend several hours a day laying propped up on support pillows on my orthopaedic bed. People don’t usually realize this, but it is a necessity after a particularly busy day! I am often in bed by 6.30pm. Fortunately, you can take your work with you!
  7. I was recently on a camp with my daughter. I knew that we would have a hectic schedule, and be sleeping on air mattresses. I advised my doctor, and made sure I had extra pain relief to help me cope. I also took my trusty TENS machine!
  8. I scheduled a rest day for when I arrived home. I needed it!
  9. I try not to compare my schedule with other people’s. Their journey is their own, particularly if they aren’t deaing with chronic pain and incapacitation. I can only do what I can.
  10. It is okay and normal to have down days; times when the pain is relentless and steals every ounce of energy. Roll with it. Your body needs to stop.

Be kind to yourself and don’t over-commit. It’s okay to play it by ear and see if you are up to activities on the day. It is a miracle that you are functioning at all, so give yourself a pat on the back! There will come a time when I will accept further treatment, and I will be grateful for it. Every life has seasons, and the time of reparation and recuperation shall arrive. In the interim, I listen to the concordant trill of birds. I sit outside in the sunshine and eat my lunch with a light breeze tapping my shoulder. I see friends and post silly memes to give myself a giggle. I try to reduce life into bite-size pieces of beauty, and live in the moment.

Getting my back up


To get from my town into the city, I have to take a bus and then a train. I usually have a spinal brace on, and carry a lumbar roll wherever I go to place in the small of my back. I take pain relief beforehand. I can cope with the stiffness and discomfort quite well, but if something extra is required, it messes with my system and the trip home is hell. I have had times when I have been doubled over on the trip home-whether by car or public transport. I was taking a certain medication twice a day to help the sciatic pain and I must say, it kept me walking. However, it was rendering me a zombie in the mornings, and I craved bed so I could go back to sleep. I now take one dose at night time, and whilst the pain has crept back during the afternoons, at least I can function in the morning and get my daughter where she needs to go.

For over twenty years, I have been in extreme pain, though I can still recall a time when I wasnt. I remember what it was like to skate, dance and be flexible. I miss those times. I have learnt what I can do by discovering what I can’t; where my limits are. My days are structured to the letter. Morning weights to keep my bones strong, and physio exercises for my spine. Brace and Tens machine after a shower and liniment. Morning medications to help with pain and inflammation. Of an evening, I have a bath, my medications and am usually in bed by 8.30. The relief of laying flat at the end of a day! I wake several times with the pain during the night. If I am held up during the day, and can’t take my meds at the usual time, the pain gets out of control, and I am almost delirious because of it. I have to have excellent time management.

One day a few months ago, I was given a friend’s newborn baby to hold. I have difficulty lifting-even raising my arms is excruciating- and whilst I loved holding this precious bundle, I was in agony for days afterward. I resent that the pain limits my ability to lift a precious baby. When my daughter came along, I bought a crib that I could wheel around the house, lifting her onto my lap when I was in a rocking chair to avoid strain on my spine. If my baby ever has her own babies, I want my spine to be strong enough to do the same. This is one major reason I work so hard in the here and now on my back!

Sitting for any length of time is a challenge. All the weight goes to three dessicated discs in my lumbar spine. If I am sitting too long in one spot, the pain is out of this world. Laying down is the most comfortable position. I worry when I need to take long car rides or plane trips, as I know pain will be a companion. I just want to try and hold it together. I am on as little pain medication as I can get away with, acutely aware of the balance between being functional and not. Without it, I would hardly be able to walk, let alone get out. I have had a few incidents lately when my right leg simply wouldnt do as it was told. I fell over in a toy shop, and a dear lady raced over with my daughter to help me back up!

Most days I cope, but there are days that are so abysmal that I break down. I fear that the time has come to undertake corrective surgery to keep me going. Then, I come back from the abyss. I hope the centre holds for a little bit longer. I am not frightened of what lays ahead; I just want to be strong enough to hold my grandbabies one day.

 

Back Pain Sometimes isn’t Transient


My first surgeon informed me that I would be left in agony, over twenty years ago. Sitting would apparently cause me to weep after an hour, as would standing. Pretty much anything other than laying down would bring me to my knees. Sharp shards of bone, as well as metal artifacts are piercing into my spinal canal, causing a 50% reduction in the vital space. Despite this, I managed a pregnancy, and raising my daughter. I have traveled and have a demanding schedule every day. That surgeon was right; it does bring me to my knees.

I had to do a grocery shop the other day, and found my spine seizing up. There I was, draped over my trolley, groaning. My daughter didn’t bat an eyelid. She just asked what we needed and went to get it. She then loaded the bags into the trolley after I paid. I crawled into bed, and she made me toast for dinner. I lay there for fourteen hours, until I became concerned about the load on my kidneys and knew I had to catheterize.

The next morning was comical. I have a portable TENS Machine, which has proven to be gold. To my dismay, I couldn’t find it! I was rummaging through every drawer in the house in desperation. I finally sourced it, only to find the battery was dead! I could have cried. We had to go down the street to get a new battery. I had applied heat to my back, and a magical ointment, taken three different medications and put on my back brace before leaving home.

These are the things I adore. They make a real difference in my life. I have spent an obscene amount of money on things which have promised to relieve my back pain. I have done the magnets and fancy exercise equipment, the oils and potions. The tools below actually help. The degree to which they assist, depends on the day and the obscenity of the pain.

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A blessing in a hot bath at night.

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This was recommended to me by a scientist friend after I fell over and broke my back again six years ago. It can even be used on fracture sites.

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My portable TENS machine is my saving grace when out and about.

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Heat Pack. Needed throughout all the seasons!

I sometimes relay the severity of the pain and aftermath to people. I want to convey that I am not avoiding anyone, nor have I been in the space to answer messages, etc. It does irritate when people say that they hope I feel better soon. Honey, I am not going to feel better soon! I have pieces of bone and metal, similar to knife blades, sticking into my spinal canal! My fused spine is disintegrating, as are the grafts. It isn’t going to get better. I have accepted that. May I ask that you love me instead. Come over and have a cup of tea with me. Pour me a wine and commiserate. I don’t have a cold, which can be overcome.

I almost kissed the lady in our local bargain store, who upon viewing the little battery from my TENS machine, assured me they had one in stock. The relief! So I continue, as we all do. Broken yet somehow whole. Small and yet ever so tall.

Retreat and Refreshment.


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This was me at the end of term 2. I was hanging out for the school holidays, longing for days at home. The last week of term, I was in the city five times for workshops, shows and other commitments. It is a journey of almost two hours each way. I would curl up in the shower each morning, allowing the heat to wash over my spine, willing myself to get going. When you are in that level of pain, you operate on automatic pilot. The promise of a two week break got me through. We have been for walks through our beautiful town, and have had plenty of home days. It has been bliss.

 

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Getting the house in order and planning for Term 3 has been wonderful. Resting when I need to, and playing with my daughter has been a treat. Life gets so busy; too busy. There needs to be retreat as well. I don’t know how anybody with a massive amount of daily pain does it. I certainly don’t know I get through!  I do it because I have to. I am grateful that I still can.

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This is sometimes where I find myself. I have to rest, and connect with my daughter. I need to lay flat, as it’s the only way I find relief from the relentless pain. It is frustrating when there are so many marvelous things going on, and so many special friends to see. Those closest to my heart are those whom understand and patiently await our return to society. I appreciate them with all my being. No pressure, just love. I am starting to let go of feeling bad if I have to have a day in bed to recover.

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These are indeed the best moments; the pockets of time where we can heal and grow strong. On my walks, I have been able to appreciate the sound of the bell birds and kookaburras, the sight of llamas, horses and cows, and the pleasantries exchanged. I have caught up with friends I haven’t seen for well over a year, and it is as though no time has passed. We pick up where we left off, and there is nothing but love. I will keep going on this strange and wonderful journey, and during term, whirl around from event to event. In the holidays, I will continue to retreat into the mists, emerging refreshed. It is how it has to be.

 

 

Slowing Down and Crumbling Spines


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I seem to have entered the next phase of my journey. I had been trying to cope with my spinal pain with minimal pain relief for several years, something I can no longer do. My MRI results showed that the remaining discs are reduced to something akin to chalk-dust and my spine is riddled with arthritis, pressing on the nerves. The pain management program has ramped up, and is necessary to keep me moving. I have had a strange sense of vulnerability as a result. Some of the medication makes me tired, and I have had to have early nights. I find it hard to remember the names of people I don’t see often, and find going to large social events trying, as I am away with the pixie’s. I want to be quiet, have rest and not have too many commitments. Sitting for long periods is agonizing and I need to move around. I have to plan everything well in advance, even the weight in the lunchbox I carry when attending excursions with my daughter. I am dreading winter as I know too well the agony that grips my frame. I have to know the time it will take to get somewhere and when I can expect to leave. If I am prolonged, it can mean a day in bed afterward. A day lost. I have left items in stores as the weight would be too much to carry. I have had to pardon myself from the table so I can move around outside. There are hundreds of examples I could give you. Things people without this damage wouldn’t think about at all. My doctor said that elderly ladies’ she knows find their spinal pain excruciating when ironing. I need to dose myself up before this task, and look on with dismay as the laundry basket fills with items needing to be ironed. I have the spine of an eighty year old, and somehow it has to keep me going for the next half of my life.

My daughter and I have a synchronised routine. At the dishwasher, she deals with the lower section. She loads the front-loader in the laundry and puts the washing on the line and takes it off. We have our dance, and it works well, an unwritten love and understanding flowing back and forth. I have high hopes that within the next decade, they will be able to rebuild and strengthen backs with a simple injection. I am walking several kilometres most days, in spite of the pain. Living in a semi-rural environment helps you escape the confines of your body and focus instead on the nearby river, the kookaburra’s and cockatoos, their laughter delighting  my angst-ridden mind.

I need to have some of my back teeth rebuilt, after they came loose on a sesame cracker. I would rather have spinal surgery, the truth be told! You have to laugh; I was trying to limit my intake of bread, so for lunch ate these gluten-free, rock-hard crackers, and lost my teeth! Even if I end up in a wheelchair, I honestly wont mind. I am so grateful for the years I have had being able to walk. I am grateful I got to carry this child, despite the odds. I am happy with my lot in life, even if I have to plan my itinerary of a day as if embarking on a mountain trek! It is about focusing on what you have, not what has been subtracted from your life. I will need to recalibrate my life, and my expectations of myself, but it wont be the first time I have had to do so. The headaches from the Lyrica have finally stopped, just as I have been advised to double the dose. Always a mountain to climb. As long as the backpack holds a tolerable weight, it will be okay.

 

MRI’s, a Painting and Pegs!


The period between school terms went by in a purple haze, taking with it, Prince. Fans woke in shock to hear the news of his passing last week. This year has taken so many individuals in the arts, and it’s only April! 

The holidays were divided between time at home, and being out. My daughter caught up with a few of her gorgeous friends, and it made my heart soar to witness the bonds deepening. The girls put down their electronic devices and made up dances and spells, plays and songs. We also went to plays, including The Peasant Prince, and Cautionary Tales for Children at the Sydney Opera House. It starred the extraordinary Virginia Gay. She held my daughter spellbound.

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I was gifted these divine bird pegs by a friend. I have written about this friend before. A nurse, she has had health issues the past few years, and has astounded me yet again, by putting her hand up to support a local lady as she flies to Singapore. This young lady has MS, and her symptoms have escalated. She has gone to Singapore for intensive chemotherapy and stem cell treatment. I am thinking of both these valiant women. They will be in my heart every time I peg an item on my clothes line.
 My friend Diana Reynolds is an artist, and she gifted my daughter and I this enchanted painting. It has pride of place in our home school room, where we get to admire it daily. To check out more of Diana’s work, click here.

My MRI results weren’t what I wanted them to be. I had hoped to receive a procedure known as a discogram, to shrink my remaining discs. It was found that they had all desiccated, which explains why I wince every time a bus or car I am travelling in hits a bump. I have no shock-absorbers! I wish it were merely a case of changing the shock-pads! There are many more issues, which I have neither the time or inclination to see to at the moment. I only had one day in bed throughout the holidays, so I am relieved. I carried on, throughout social occasions sometimes with the aid of a stiff drink and for that I am grateful. It is a nasty, merciless agony, which has grown into a monster. I humour it; I temper its fury and I promise it the world if it will just let me do what I need to do. When my daughter is  a little older, I will have that longed-for overhaul. I will admire the bird pegs, and the symbolism behind them. They have the ability to fly, and yet they are anchored. Perhaps it’s a comfort, behind grounded. They know that they have a choice.

Term 2 has just begin in Sydney, and I look forward to many more adventures. You could live for a thousand years and still not experience all that there is in this world. I had a conversation with a friend who is extremely ill. She told me her simple wishes for the next year or so. In light of her disclosure, I am going to apply for a passport. Life is too damned short and it flies by like a bird unanchored. Pain and illness, nor nothing else is going to stop the experience of new horizons. It mustn’t.