Category: Chronic Pain

What I missed when I was a Hermit

raphaela991 Comment

I went through a long period as a hermit,  both out of necessity and for health reasons. The outside world became a terrifying spectre, one I feared may swallow me whole. I read books and wrote of my experiences whilst inside hospital wards and in my room. Worlds can be contained in a small space, and I lived a hundred lives and died a thousand deaths whilst awaiting my return to the outside world.

I dreamed of performing simple tasks and going to ordinary places. The thought of going to the bakery and asking for a seeded loaf, or opening my own bank account, terrified and enthralled me. The thought of ordering food in a café or requesting a movie ticket was unthinkable. I would go through the actions required to get public transport from Point A to B a million times. Going to the letterbox made me feel vulnerable, let alone going down the street. I missed conversations, and the strangers whom you bumped into as part of a day. I missed the aromas streaming out of restaurants and the music of street artists. I missed the harried workers rushing to the station and building a rapport with the people at my favourite places, until they had become friends.

I don’t regret my years of hermitage. I was unencumbered by other’s input. I wrote stories which weren’t savaged by critics and dressed in my best clothing, styling myself without popular opinion playing on my mind. I was ruler of my thoughts and if a bad pain day or stalker caused me want to scream or weep, I could, freely. I knew where I started and other people left off with regards to boundaries, as I was the only one there! Much was given, but there was also much taken away throughout those years.

I didn’t travel, nor dress to be seen. I couldn’t think of anything worse! I could be dressed in electric blue, though still invisible. One day, the doors were flung open, and there I was, out in the world. I was eighteen years of age. I took note of the prices at the local shops, writing them on a notepad and memorizing them. I had to learn everything, from how to ask for services to how to talk on the phone. Everything was new and thrilling, terrifying and stultifying.

Circumstances have seen me recede at times. I may have had surgery and am not strong enough to go out into the world, or circumstances have conspired to push me into a constrained space. When I am able to open the front door, I am greeted by sunshine and fresh air. I have had enough of living inside; of living within my imagination, and not out in the world. I am privileged to have been given the gift of knowing that I don’t need people to fulfil me, rather I delight in being with them. There is a marked difference.

To go to a movie or concert by yourself; to travel and dine singularly is still a lovely experience. To have been a hermit and not enjoyed your own company would be a nightmare! Fortunately, I can still laugh at my own jokes and bounce ideas off of myself. I look forward to seeing more of this world, what with its questionable leaders, crazy politics, beautiful folk, glorious art and delicious food. I have merely dipped my foot into the waters away from hermitage valley. I look forward to being fully submerged.

I am more than my pain

raphaela999 Comments

Last week, I watched a young woman jog by my house. We exchanged greetings, and I was hit by a body memory which revealed itself as sadness. I recalled that I had once roller-skated, rode a bike and horses, gone on amusement rides, danced, done yoga and aerobics. I was a very active kid, and loved to jog. These were my happy times, when I celebrated being in my body, rather than feeling detached. I loved putting my headphones on, and running for miles. I loved being able to contort my body, skating on ice and in the rink. I even loved the war wounds from falls off my bike after performing a hazardous stunt. No wonder I so enjoy watching my child perform extraordinary feats! She reminds me of myself as a kid.

When my spine broke, it all stopped. It was like a grandfather clock seized ticking when it’s owner died. I told myself that none of it mattered, that being alive was reward enough. It certainly was, but there was nobody to confide in for the grief of what was taken. It took years to overcome the panic of having a spine entirely fused. It feels unnatural, like somebody has glued you together as a statue, with immovable parts. Your mind craves the liberty of being able to stretch and bend, only you can’t. It was worse when the rods and Hartshill rectangle were inside my spine. I could feel the wires and screws, and desperately wanted them gone. For somebody that had been so active, I now had to go back to basics, applauding myself when I walked a hallway or up a solitary stair. Cheering myself on when I managed to lift my arms. It took years to retrieve the pieces of my psyche that had been thrown in the air. It has taken years to not feel trapped, as if I was in a permanent body cast.

I have done my utmost to feel like the spirited, irrepressible girl I had once been. As I age, my spine is getting worse. Taking deep breaths is breathtakingly hard. Sitting hurts, walking hurts, everything hurts, all the time. The recent diagnosis of Trigeminal Neuralgia has been hard to take. At a time in my life when I need to steer my daughter towards her high school years, and kick my own goals, my head is now complaining. Where once I would have climbed a tree or gone to the rink to skate as an emotional release, it is now found in theatres and cinemas. The bar was forcibly reset when I was fifteen, and triumphs are uncovered in how I get through my days. There is my daughter and I, doing life together, alongside a fragile spine, neck and head.

She went bowling a while ago, and when I told her friend’s mother that no, I wouldn’t be able to take part, she answered, ‘there’s not much you can do, is there?’ It took my breath away, such was the punch in the gut. She boasted of all the physical activities that she shares with her child. I know she didn’t mean to hurt me, but it hurt nonetheless. I have had to drown out the opinions of others, and remember that I coped with pregnancy when they were concerned I wouldn’t be able. I coped as a new mother, training in preparation by carrying around bags of potatoes and oranges whilst still pregnant. I did weights so my arms would be strong enough to hold her. My triumphs are quite different to other’s.

I fulfil my obligations to the best of my abilities and find joy in each day. Pain and gratitude can live together within one’s body. There are weeks that are truly horrendous, and not just due to pain. I require catheterization, and sometimes, there just isn’t the money to  buy the necessary amount of disposable’s for the week. That alone costs over $100. I ration myself,  to the point where my bladder isn’t damaged. Medications, specialist appointments and tests all cost above what my private health fund covers. Then there are the aides that make life easier. To be able to laugh and enjoy life in spite of it all, requires some doing at times! It can be devastatingly lonely, and frustrating. The stuff you don’t see on social media. I tend to go to ground, readying myself for the next round, particularly when I know there are busy days ahead.

I can cope with the medical stuff, and am preparing for quite a wild ride this year. There will be having fractured teeth pulled, root canals, impacted wisdom teeth, possibly having spinal cord stimulation and surgery for the TN. There will be medications to keep me going also, and trials for this and that. I just wish I could join my daughter in her trampolining and acrobatics. I wish I could go skating with her and climb trees. It’s funny, even though I am frightened of heights, I was never panicked whilst in the canopy of a tree. I felt safe. There is a tightrope to walk between acknowledging one’s pain and limitations and living life large. Concessions must be made, such as spacing out activities and factoring in rest. I am not ready to wave the white flag yet. Schooling my daughter these past four years has been a joy, and has given me such a wondrous gift. I know the best is yet to come, for her and I.

So there you have it, the blasted conundrum of living within an altered body. Feeling frustrated and angry, sad and exhausted, whilst also having a spirit of gratitude and wonder. Yes, wonder; at how you have adapted to your changing circumstance. Wonder at how beautiful life is. Gratitude that the arts have been able to replace physical feats as a means of release. I see my wounds as a gift of sorts. Animals and strangers come up to me routinely, as though they sense the vulnerability of a wounded person, and are drawn to it. It makes you approachable, and others tend to see you as someone they can confide in. It is a privilege, a compensation for the piercing pain. Time is too pressing and life too extraordinary to waste on nonsense; pain teaches you that. Time is a master that needs to be obeyed, and is followed to the second. My mind can cope if I prescribe it a timetable, and it knows that rest is coming up shortly.

I am learning as I go, often making up new rules on the spot. I am in it for the long haul, and can adapt as needed. I grieve when memories come up of skating and bowling, riding bikes and running. I grieve as needed, and acknowledge as required. There may be activities I can no longer partake in, but doing life isn’t one of them!

The Ring Walk

raphaela991 Comment

I have always had a terror of heights, and had to be excused from excursions featuring walks across Sydney Harbour Bridge, Centrepoint Tower and the footbridge at Darling Harbor. The mere thought of traipsing across walkways was too much to bear. Of course, my acrophobia became much worse after I soared to earth and broke. You can’t easily explain to other people what it is like to be jostled up a stairwell, nor set on a ledge. They can’t understand how it feels to soar through the air, knowing you will crash to earth within seconds. They don’t know how any of it feels, for the simple reason that they haven’t felt it. My survival is due to a combination of things; I was able to talk him down from the roof, and to the next level. There were bark chips (rather than concrete), underneath this new level, and the few metres less gave me more chance of surviving. I have taken for granted many things in my life, but my survival has not been one of them.

When memories are stirred, and flashbacks take place, I am usually alone. I make a concerted effort to be alone at such times. I get through it, in my own way. Yesterday, I had probably one of the worst anxiety attacks of my adult life. The day started pleasantly enough. I was taking part in a walk with a group of people, and we chatted happily as we strolled through parklands. Two kilometres in, we turned a corner, and I was caught up in the group. To my horror, I found myself to be on The Ring Walk, a circular walkway 550 metres in circumference and 18.5 metres above a sandstone floor. The panels either side were transparent, allowing a complete view of the drop below. My heart beat wildly, as I summed up my options. I couldn’t turn back, as there was a sea of people approaching from behind. The thought of advancing forward seemed unthinkable; I still had such a long way to go.

The Brickpit Ring Walk at Sydney Olympic Park

I stood paralysed until a friend noticed my discomfort. She asked how she could help. I said that if she could link arms with me, and keep me chatting, I could cope better. We walked quickly as we talked about anything other than being on this walkway. It seemed to take hours to get to the end, but I kept my focus on gratitude; that this stunning woman with raven curls had noted my anxiety from afar, and instinctively knew what was happening to me. “We are at the end!” she cheered, and as I let go of her waist, my body felt like lead. I was dripping with perspiration and shaking uncontrollably.

There are many things I can control in way of responses, thoughts and emotions. My acrophobia is not one of them. I have a daughter who delights in heights, and is skilled at ascending without fear, and descending in a safe manner. My acrophobia affects nobody but me, and I am pleased about that. I crawled into bed, nauseous and exhausted last night, and it took 24 hours to still the surge of adrenalin coursing through my veins. No matter how many times I assured myself that I was safe, that there were no baddies behind, ready to throw me below, my body recall wouldn’t have it.

I usually fight the past alone. Yesterday, somebody stepped into the fray and not only acknowledged my past, but how I felt in that moment. It was a gracious act, filled with empathy. This lady has no fear of heights, but put herself in my shoes. Not only did I survive the Ring Walk, but I was given the gift of being completely vulnerable in front of another, and not only being seen and heard, but held up. I did something I never would have dreamed I could, with a dear friend lending me her strength.

The Physiotherapist

raphaela992 Comments

I have spent thousands upon thousands of dollars on physiotherapy in the twenty-plus years since my fall. I have done weights with physiotherapists, been placed on stretching racks, been in body braces, calipers, body casts, had my muscles shocked, been in hydrotherapy pools, and so much more. I still have the initial regime on paper, that I was instructed to do ten times a day, on top of swimming, hydro and physio sessions. It went on for years. To be honest, I was now full of hubris, believing I knew all there was to know, and could do the required moves in my sleep.

When my doctor set up a health plan for their physiotherapy department, I procrastinated. I was too busy for such indulgence, and besides, I knew everything there was to know! In spite of myself, I made a booking. My, how I laughed at the new patient form I was required to fill out, with minimal space in which to answer how many operations I have had, and what my injuries were. I had to resort to miniscule writing, to make it all fit.

The physiotherapy department really knew their stuff, massaging and kneading and coaxing trapped nerves to yield with subtle movements. They explained how the various muscle groups had compensated for my injuries, and what the plan was. Of course, they asked how on earth a teen had managed to obtain such injuries in the first place, and I told them in a matter-of-fact manner about the abduction and attempted murder. There was shocked silence, until I broke the ice, and then we all laughed as I regaled them with tales of the characters I met throughout the months I was in the rotor bed. It is a hell of a tale to lay on a stranger!

One of the fellows has a partner, and this week, I asked what they had done for Valentine’s Day. I was expecting the usual; that he had ordered red roses and chocolates and that they had gone out for dinner. Instead, he replied that after work, he had met his partner in the city, and they had purchased crates of fruit and water. They had then handed out bags to 200 homeless gathered near Central Station. “We don’t need gifts,” he explained. Apparently, they did this every birthday as well. “We don’t spend money on useless stuff, we buy things that will really help someone else.”  I said in reply, “that my friend, is real love.”  Not only have he and his colleague gifted me with their knowledge regarding my spinal column and neck, but he also revealed  what real romantic love can be in this world. Sacrifice, kindness, humility. I could picture this gentle man and his equally lovely girlfriend smiling as they handed out water on a blisteringly hot evening in Sydney. We talked of the lack of affordable housing in our city, and wondered aloud how greed has been allowed to become master and major consideration in all things. If he were to run for office, I would be his campaign manager. Imagine if everyone repurposed a fraction of their wants and put those resources toward others. Miracles could happen, just as surely as muscle groups yield to a physiotherapists’ masterful hands. I left buoyed with the thought that hundreds of people in this city felt loved on Valentine’s Day because of this dynamic duo.

After more than twenty years, I still have a thing or two to learn from physiotherapists. I rediscovered the difference they can make as to how I manage my pain. I have also rediscovered the gold one uncovers when you have nowhere to go and nothing to do but be in the moment.

Christmas and Stress

raphaela998 Comments

I recently lost a young friend, unexpectedly and in the most shocking of ways. It shook everyone to their core, including those whom never had the pleasure of knowing her. There seemed to be a collective sigh as masks fell, revealing the truth behind the smiling Instagram pics and depictions of lives filled to the brim. Life is part joy, and part sorrow. Social media accounts don’t necessarily lie, but rather they tell the polished version of lives. We don’t want to burden others with the challenges and pain. Throughout the past month, I have had many people apologize for telling me that they are doing it tough, and I have insisted that ‘burden’ be reframed as ‘sharing.’ We have to share. Spells are broken when we speak aloud, and we hear our voice speaking that which was hidden. I came into December feeling that I knew more about my friends. Even strangers on the bus have become more than acquaintances through the act of sharing. What people had once kept hidden astounded me. No wonder the smile slipped on occasion, and indications of anxiety peeped through!

People have told of the challenges of having two separate Christmas celebrations for children, of estranged family members whom they have to see separately. They have told of poverty and housing stress, ill-health and exhaustion. Trying to hold it together when inside, everything is falling apart. I was diagnosed with a neurological condition a short while ago, an extraordinarily painful chronic illness. I can’t even pretend to have it together at the moment, and the relief is palpable! My daughter is in WA with dear friends of mine. The mum and I did IVF together, and we ended up with daughters, who have been best friends since they were babes. I minded this little girl earlier this year, and I had tears when I heard the girls discussing how they knew they were wanted because their mums went through so much to have them. The understanding of how we longed for them shall hold them in good stead, even when the world tries to beat them down. It is a wondrous foundation to have!

My little girl has climbed the tallest tree in Australia; she has been snorkelling and visited Quokkas. In case you don’t know what a quokka is, here is a picture.

Cute, aren’t they?!

I am trying to manage my pain, in the midst of writing a book and organizing Christmas. There is much I have had to let go of for the sake of my sanity. I have ordered a few gifts online, but for the most part, have had to go easy on myself. I won’t be up until midnight, writing out cards for everyone, as much as I would love to. I simply can’t. Events have been planned in advance, and preparations for everything from travel to what I need to bring have been arranged into bullet points on a notepad. Christmas to me is all about connections rather than gifts, and I am hoping to be up to visiting people next week to check in on them. I had been planning to catch up with a group of ladies whom I haven’t managed to see all year, and invited them around for afternoon tea. I bought some fresh fruit and a little platter of cheeses and mineral water. We had a lovely time, and it cost less than $20. Christmas doesn’t have to mean expense and maxed-out credit cards. I have known many homeless folks, and those without family connections, and believe me, being invited to a Christmas lunch is worth more than gold. The best gift is being seen and heard.

One lady apologized for how harried she felt, for complaining about the stress leading up to the main event, and felt bad for her anger. I told her to stop apologizing! “Anger; unadulterated rage, kept me going in the early years after my fall,” I told her. “It can be a way of saying that a situation isn’t right, nor is it fair. It spurred me on, to work hard on my rehabilitation.” We are allowed to be angry, particularly when too much is expected of us. I love the saying, ‘If you present as strong and together all the time, much is expected of you, and then you have nowhere to go.’ People assume you will say yes to their demands, not realizing that you too have a breaking point.  We may want to retreat and that is okay too. I know many folks who take themselves away at Christmas time, to avoid unnecessary stress.  We have this notion that the Christmas season should see us morph into someone larger than life; a version of us on steroids, where we need to find more money, time and energy than in the other eleven months of the year. Not only is this unrealistic, but impossible, without burning ourselves out.

My daughter and I have a tradition of going into Sydney on the last day of November. We walk around, taking in the decorations and sights. We hardly spend anything, just take festive pictures, talk to strangers and listen to pianist’s play on the Grand Piano in the Queen Victoria Building. We come home feeling as though the veil has been lifted between the hum drum of the rest of the year and the heralding of the festive season. We walk around neighbourhoods admiring light shows at night. We sing along to Christmas carols and watch Christmas movies. It is a wonderful season, when you turn down the volume on expectations and what you should do and feel. Open calls to the beach and swimming pools, taking along a picnic hamper and catching up with friends. Reviewing the year past and planning for the fresh year ahead. Allow yourself to feel what is brewing inside your mind and soul. Allow yourself at least five minutes of peace each day. If we are open and honest with one another, we will find it easier to cope. Look for the beauty around at Christmas time. It costs nothing, and brings such joy.

I am honest about the challenges I face regarding this season. There is grief for those lost, sorrow for what has come to pass, and pain for expectations unfulfilled. There is also light; a belief that the best is yet to come. There are friendships and invitations to sit at people’s tables. There is tinsel and pool parties, hugs and carols. There is reflection and gratitude. I own each in equal measure. My fervent wish is that you have a blessed Christmas, and please, be kind to yourself!

Depression, Grief, Animals and Butterflies

raphaela993 Comments

I saw my bus coming, and stepped aside so an elderly woman could climb down. She paused at the door to compliment the driver on his thoughtfulness and driving ability. A conversation began between two older ladies, both of whom reiterated that he was a safe driver, steering the bus smoothly. He said goodbye to his passengers down the road at changeover, giving a cheeky wink to these two, and the ladies gushed some more over his impeccable manners. One of the women was born in Portugal, the other, Italy. Both had lost children in road accidents when the kids were seventeen years old. The people responsible were each handed a suspended sentence. The shared horror saw the women sit in stunned silence at their chance meeting, until the other lady departed the bus at a shopping centre. The Italian lady’s daughter was a girl called Lisa, and she had died alongside a young friend. Lisa’s father, overcome by grief, took his life shortly after her death. Her friend’s mother also took her life a few years later. The Italian lady, Rosa, felt she had to keep going for her other children. She knew she couldn’t do it alone, and found help with the aid of counselling and medication. I was so moved by her openess, her courage and quiet dignity. I squeezed her hand as we said our goodbyes. I thought of her Lisa at the train station, and how astounding it was that Rosa had survived that dreadful volume of tragedy. At that moment, a Monarch butterfly fluttered down to my daughter and I, resting on the bench beside us.

We were on our way to a special event, the vision of which was spurred by a young war widow whose husband had sadly taken his life. We were going to sing; to gather for these families, and all service men and women, past and present. I posted photos that evening, and a particular friend liked them on social media. I smiled, knowing that we would be seeing each other soon at a mutual friend’s get-together.

The next morning, I was alarmed to find what read as a farewell on her Facebook. A group of loved ones were beside themselves as her phone rang out. We were all eager to hold her, to talk her through the crisis. To simply be there… Tragically, we received word that she had taken her life. The events, people and conversations of those couple of days seemed intertwined. Grief and depression, butterflies, PTSD, remembrance…

Depression is a filthy liar. It wants us to believe that we are alone, isolated. It tells us that nobody can help us, that nobody cares. It assures us that strength is only found in standing alone, keeping our pain to ourselves, and sharing with nobody. It says that we are a burden, an unsightly stain on otherwise blissful lives. It is a liar.

Rosa and the lady from Portugal gave me a gift when they talked of their lives and their grief. I now know these women at a profound level, and look forward to many more conversations, deepening the friendships on our bus journeys. I know about the children they lost, and shall keep them in remembrance. The young war widow who inspired a new way of honouring our soldiers has spurred needed conversations about PTSD and the care of our men and women. A woman in her seventies talked to me-a stranger-about her husband’s suicide and her subsequent deep depression. We need to keep talking, reaching out and sharing. Whenever I see butterflies, my thoughts shall turn to those whom we have lost to the insideous scourge of depression and PTSD. Keep the conversation going; visit those whom are struggling. Make contact with those who seem to have retreated. We are not islands, nor were we ever designed to be. My suicide attempts were serious indeed, and quite frankly, it is a mystery as to why I am still here. All I know is I’m thankful beyond measure that I am.

I sat by the river near my home yesterday, filled with sorrow. Tears pooled in my eyes, and slipped down my face. Within moments, a duck had waddled up, sitting at my feet, quacking away as though it were telling me the secrets of the universe in duck language.

It was soon joined by a dragonfly, a willy wagtail  and then this guy.

Wiping tears from my eyes, I smiled at the motley crew assembled. It had been the first time I had left my house in several days. I had finally remembered my own advice to others, that whatever depression and grief urges you do, you must do the opposite. I no sooner desired to go for a walk than I craved root canal surgery, but I knew that was what I had to do. I would never have met my erstwhile friends had I not. Keep reaching out, keep talking, and know that life simply wouldnt be as grand without you. You are wanted, you are loved and you are needed.

Triggers and PTSD

raphaela99Leave a comment

We have to share with each other; it’s an absolute necessity. I have seen people retreat, building a fort around their minds and hearts. I can tell you from experience, it is the absolute worst thing that you can do. I have seen brilliant people rescind mid-way through stellar careers and lives,  eaten alive by depression and the aftermath of  trauma. I am often too busy to deal with my memories and triggers at the time they come up. I admit it’s a state I am not only grateful for, but prefer. I then wonder why I burst into tears in the shower, crawl into bed, unable to converse at the end of the day, or am irritable and bereft. I sat down and wrote some of my triggers, and then sardonically laughed, incredulous that I ever questioned why I am exhausted and crave space at the day’s end.

Here are some of the places, aromas, music, etc, that bring forth strong memories and emotions:

Suburbs: Concord, Bondi, Auburn, Greenwich, Lane Cove, Katoomba, Westmead, Parramatta, Revesby, St Leonards, Manly, Ryde, Lidcombe and Kogarah.

Scents: Anais Anais, Tabu, sandalwood, Aramis, cigarette smoke.

Songs: Run for your Life, Sorrow, Hard Woman, Dear Prudence, Stairway to Heaven, Belladonna, Oh Father, Stray Cat Blues, Ruby Tuesday, Comfortably Numb and so many more.

Conversations about crimes and offenders, falling, abductions, crimes against children, abuse. Seeing famous people and institutions fall one-by-one, some of whom I once looked up to.

Hearing people scream or argue loudly, having to climb stairwells or go over bridges; anything to do with heights, and being unable to avoid such. Hearing trains in the background or the wail of sirens, winter and feeling cold, certain herb teas that I used to drink as a teen, seeing strangers that remind me of past villains, sharp knives (I don’t own any, nor do I have a knife block), two-minute noodles, toffee, apple pies, carrot cake,

Too many movies to mention.

In any given day, I have to deal with at least one trigger that provokes unpleasant memories and emotions. I am often in a situation where I simply can’t avoid said trigger and have to somehow plough through. It is at home when the mask can fall and you can let it all out. How do you explain to someone the cologne they have spritzed has brought up unpleasant memories, particularly if you only met the person five minutes ago? What do you do when you are in a restaurant and a song comes on that hooks you straight into the past?  It is a minefield and I step on them all the time. A portion of my brain explodes, as does my heart. I pick myself up, and stagger home.

Once inside my sanctuary, a few things happen. I turn on gentle ambient music, light candles and drop some lavender oil into my diffuser. I play with my birds, and prepare a healthy dinner. I then soak in a bath filled with salts and essential oils, slip into pajamas and dim the lights in my room. Breathing deeply, I try to sort through what has transpired throughout the day, and what has come up for me. I let it be, assuring myself that it is of little surprise that I felt adrift, and that it is completely normal. I try to sleep, aware that I may have nightmares, if the triggers were strong enough. Waking, I will have a herb tea and hot shower, and start the day, hoping that the triggers go easy on me. This is PTSD, and trying to navigate through it.

When I was a teen, I met many returned military personnel and emergency responders, damaged by what they had seen. I met scores of people who had been in notorious orphanages. I met people who had encountered unimaginable horror as young people. Back then, knowledge of PTSD was in its infancy. These folks were thought to have ‘shell-shock’ or a nervous disorder. I regret not having my PTSD acknowledged for many years, as it is crucial to seek treatment early. When I open the paper and see an institution or individual I had encountered finally being brought to justice, a part of me rises, and yet another part of me falls. Why did it take so long, and why did so many have to suffer? Why weren’t we heard way back then? I take comfort that the world my daughter is growing up in is slowly but surely changing. The treatment we were told to accept would be deemed outrageous now. At last, at last.

I live with chronic pain and will require more surgery. I haven’t been able to run, rollerskate nor do many other things with my daughter, and need to be supine more than other mums. My daughter has borne witness to tears brought on by my constant pain, and seen my whole demeanour change when faced with a trigger. It is a wicked burden for both her and I to carry. It shouldn’t have happened. The times are changing, and it brings me such comfort. As I endure my nightmares and flashbacks I am at least assured that the days of being silenced are coming to an end. I feel like a bird with a broken wing, trying to heal and trying to fly. I am slowly getting there. The public outing of personalities whom had hurt and damaged many people has helped. No more dark spaces in which to hide. Suddenly, there is light.

Rotorua, Sulphur, Mini Golf and Flemish Rabbits!

raphaela991 Comment

My daughter and I travelled to Auckland airport from Sydney to attend a wedding in Rotorua. It was our first international flight, so we were excited! We left home at 5am, and got to our lodgings after 8pm. Fortunately, I had prepared my spine -full of arthritis, spondylosis, etc- for this epic adventure, and after a hot shower, crawled into bed.

The trip to Rotorua. This van was in front of us for a few hours.

The next day, I needed a good walk, so we went into Rotorua, and had a marvellous time looking in shops (which are markedly different to ours), and talking to the locals. The cost of living is a lot higher here, which was evident in the price of petrol and food. Over half  the population exist on the minimum wage, and rents are high. I worried about the local people, and how they manage.

My friends were married at the Black Swan Boutique Hotel, a stunning place overlooking Lake Rotorua. Black swans glided by as the vows were exchanged, and the grey skies cleared and sunbeams touched our skin. The bride was absolutely stunning, and I loved how we were invited to hold the rings, placing our love and hopes for the couple into them before they were exchanged. The reception was exquisite, as were our attempts at dancing afterward!

My vegetarian meal!

We left the Black Swan at midnight, collapsing into bed, and woke early the next morning for breakfast with everyone. The bride and groom were glowing and ever so happy. It filled me with joy. We decided to head to the Polynesian Baths to partake of a sulphur spa, naturally heated to 40 degrees. I lost track of time as my body relaxed and I floated with my daughter, and it was only when we went to get dressed that we noted the sign stating that you shouldn’t stay in longer than 15 minutes! Oops! We drank lots of water afterward, to avoid dehydration, and I went to have a nap, my pained spine temporarily eased.

 

As I slumbered in our Airbnb, my daughter uncovered what she called a fairyland, Mini Golf NZ, ironically on Fairy Springs Rd. The manager, Fiona MacGregor was an angel, she said, and I just had to go and see for myself. On the way, we stopped at the local shops for a takeaway dinner, and met many homeless youth. The weather had turned nasty, and a bitter wind whipped through their thin clothing. We gave them some of our NZ money, so they could at least get something to eat. This is the hidden face of any country, concealed behind the tourist attractions and natural beauty. The operators rake in the cash, but the poor see barely a cent.

I was already entranced by the music, bubbles and fairy lighting I could see outside of the mini golf centre, but when I went in, I was captivated! Flemish rabbits bounded up to us for cuddles and pats, and were very involved as we worked our way around the course.

There was also a tame dove and a rainbow lorikeet! I was in heaven! Fiona has been here a long while, and has not only raised her own kids, but looked after many others. She is very aware of how the community is struggling, and organizes canned-food drives and Christmas hampers for organizations like Food Bank to distribute. Fiona is a good woman with a huge heart. There was something very special about her and this place. She was here for love, an essence that shimmered like gossamer around this slight woman.

Fiona and her Rainbow lorikeet

We met a lot of  Maori’s, and they expressed concern about lack of  job opportunities, homelessness, housing affordability and much more. I admire the local community organizations, who have set up linked charities to tackle the major issues. One of the major ingredients has to be a sense of hope; that things can turn around. If that is lost, mental illness creeps in, aided by alcohol and drugs. As long as hope and good people like Fiona abound, communities and their whanau shall prevail. The rest of our trip was spent in quiet contemplation and thankfulness that we had seen our friends marry, and that we had met Fiona. If you are ever in Rotorua, go see her!

The gorgeous bride and I

The Last Place…

raphaela993 Comments

I have returned to most of the places where frightful events took place… Buildings and hospitals, houses, parks and reserves. I have stood at these scenes and wept for the girl who suffered so. I wept for what transpired. I took my power back, and incorporated that young girl  into my psyche. No more feeling discombobulated, as though I had been blown apart, my ashes found all over Sydney. I became a little phoenix, rising with her wings outstretched. However, there was one place I hadnt been back to, couldnt go back to…

It was where I spent a great deal of my childhood, it’s gothic visage, cemetry and vast grounds  seemingly enormous and frightening to a child. I have visited friends at the nearby hospital, averting my gaze from the tower standing high amongst the trees at the end of the road. In the 70’s, the old hospital was turned into a mental health facility and school for children and teens. The family had many visits there, none of them ending well. So many memories; too many memories. I was to be placed there at fifteen, my third such hospital, but the only one catering to anyone remotely in my age bracket. At my pre-admission, an older teen threatened to rape me on my admittance. I couldn’t go there… I had been through enough. Besides, I wanted to work. I had left school a year prior, and my god, I had seen and been through more than most adults. This felt like going back to the beginning. I was to be held here, with nowhere else to go.

A series of events saw the story changing, and my back was broken. I ended up spending several months in an orthopaedic ward. This place is my Sliding Doors moment. What would have become of me if I had been admitted? Would my story have been better or worse? I wouldn’t have had my hip and ribs grafted into my back, to make up a replacement spine. I wouldn’t be in physical pain every second of the day and night. However, I doubt I would have healed emotionally. It was the wrong place in the wrong era at the wrong time. I would have been as vulnerable as before.

My daughter was looking forward to an upcoming camp, as was I, and we learnt where we were to be staying. Yes, it was the place I had been avoiding for over twenty years. Every cell in my body stood on a knife’s edge. Then, I breathed. I thought deeply about the timing, and whether I could face it. Memories came flooding back. The hallways and offices, the conversations and smells. How desperate I felt to live a happy life, away from all this. I believed this opportunity happened for a reason. I am now strong enough to go back, and reclaim that girl. Strong enough to go back and reclaim me. I packed for camp, and then I went to camp. I wasn’t afraid. This time, I was free to leave, and nobody would harm me. I faced the gothic structure with courage and was rewarded with my last retrieval of ash. The phoenix could now breathe fire. The phoenix could now fly.

Coping with Chronic Pain

raphaela9910 Comments

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.