An update and a farewell for now

Lying on that operating table four years ago, I shed my old self in surgery and like a snake continued shedding. I had always tried the best I could not to let my leg hold me back but the osseointegration surgery opened up a whole new life. I was able to embrace the gym more, take up Crossfit and cycling and walked my first 5km fun run/walk three months after the surgery. The volume was turned up on my life and the colours shone with vibrant intensity. I was bold and ambitious and driven. I was all in, tackled life with a gung-ho gusto and bit off goals in fierce chunks. Suddenly my previous career as a journalist didn’t fit anymore. I wanted to make a tangible difference in people’s lives and help them to live their best lives as I was now living mine. I returned to uni to study psychology, passionate and full of enthusiasm. I possessed a level of excitement that rivaled a child on Christmas morning. I thought my transformation was complete, but in reality it was only just beginning. I started experiencing excruciating pain and complications. After months of doctor’s appointments, scans, x-rays and tests it was found I had osteomyelitis (an infection of the bone) in my femur. I was admitted to hospital and after several courses of intravenous antibiotics and surgical debridements the worst case scenario was revealed. The infection had killed some of the bone resulting in the osseointegration implant becoming loose. The implant had to be removed and I had to undergo the osseointegration surgery again as well as months of rehab to learn to walk again. Suddenly everything was taken away from me. My hopes, my plans, my dreams. I couldn’t walk and with the multiple surgeries and time in hospital I had to defer my study for the remainder of 2014. My life was stripped bare.

In 2015 I returned to university, however, unfortunately I still endured health and pain complications. I suffered from chronic back and hip pain, which reached the point where further surgery was the only option. In July last year I had a complete hip construction and femoral rotation as I was born without a proper hip joint. Despite all my previous surgeries and rehab experiences, this was by far the hardest to endure. The surgery and the recovery humbled me and brought me to my knees. I thought after all I had previously been through that I was strong and resilient and after a few weeks I would solider on and be back at the gym and at uni. But as there was no benchmark for this kind of surgery, the doctors and myself underestimated the magnitude of what the recovery would demand from me.

The pain was all encompassing and due to the muscle reattachment the rehab process was slow and took every ounce of strength. For a while during my struggle I lost myself in the darkness. But I fought hard to not let the darkness engulf me. Drawing on the lessons I learnt during my previous surgeries I continued to get up each day fuel myself with nourishing foods, move my body in whatever small way I could and focus on my gratitude and meditation practice. There were days when the enormity of it all felt so huge it threatened to crush me and giving up would have been so easy. But the thought of the end result of walking and living the healthy active lifestyle of my dreams was what spurred me on and seeing the small changes, reaching a new goal or small milestone kept me going.

I took it day by day and after six months of physio and being patient with myself and my body I am happy to report that I am back at the gym doing pump and cycle classes and back at yoga. I am now walking with a walking stick and slowly building up my muscle strength. My journey is not yet over and I have more physio ahead of me but the future once again stretches bright before me.

My osseointegration journey has been a long and difficult one, but I am incredibly grateful for Dr Munjed Al Muderis. At my last appointment with him he turned to another doctor and said, “we built her up.” And I guess he has. In a way he has created me like one of his sculptures he likes to build in his spare time. He crafted my leg and my hip and took a chance on me. He saw possibilities when other doctors saw nothing but complications and shut their door on me. For Munjed, impossible is a mythical concept. And for me, despite it all, it is impossible to not have faith and trust in this man.

One of the biggest lessons the experiences of the past four years has taught me is that beauty, joy and happiness are in the little things. The small moments: a cup of tea, talking with mum, laughing with a friend, reading a good book, a blissful yoga class, these are the things that make a happy life. Life is series of small moments strung together and there is something beautiful in each day. Even in hospital on my toughest days, they would still be made up of many beautiful small moments. I learnt to make each day a celebration and not to save anything for ‘a special occasion’.

Everyday can be a special occasion if you let it be. I also learnt the importance to surrender and accept what will be, will be. Trust in the process, in the journey and what life has planned. We can’t change the outcome; we just have to accept it.

I met an amputee recently who told me he had read all my blog and watched my videos. He cocked his head to the side and asked me somewhat puzzled, why I had stopped writing as my blog had stopped rather abruptly in a spot where it was clear my story was not yet over.

At the time I told him that I had still wrote about it all but I had just not published it, as at the time I hadn’t felt like sharing it with everyone. I tried to breeze over the question and told him that I was saving it all for the book I am writing.

This is true, a book is taking shape, but I couldn’t tell him the whole truth of it, not in that room, not in front of the other doctors and members of the medical team. I often wonder if I had kept blogging and wrote about it all for everyone to see what it might have led to. But the truth is, it was far too painful to be writing for a community I felt so distanced from at the time. I had once been at the core of the OI community, I was the poster girl who traveled the world speaking about the joy of OI. I was the shiny smiling girl at the clinics who bubbled with enthusiasm as I told my story. And I loved all the amputees I met and connected with. But when it all went wrong for me I retreated. I found it impossibly hard to be around new OI recruits that were full of excitement and beginning to live their dreams and see their happy endings coming to life. It was so hard to see and hear about all their happy endings when my happy ending had soured and instead detoured into nightmare territory. It wasn’t that I wasn’t happy for them, of course I was, it was just that it only amplified how hard my struggle was at the time and how saddened I felt by the crash of my dreams that had crumbled around me. Living it was hard enough, yet alone publically reliving it on the page. Besides, did people really want to hear what I had to say? I was the cautionary tale, the very embodiment of the things that could go wrong. The potential complications Munjed lays out in front of you and which you think will never happen to you – I was the real life example. I was their living nightmare. That in itself was a hard pill to swallow. Often I felt like people didn’t understand what I was going through and I was tired of the misguided remarks that only made me feel worse about the situation.

And so it was easier to hide away, to write in private and distance myself from that world entirely. To survive was simply enough. It was all I could do. I had to fight to survive and so I retreated. For a long time I felt like a failure for not writing more and sharing more publicly on this blog. I wrestled with this, but ultimately I had to do what was right for me and to put my healing first and trust in the process. Trust that when the time was right I would write more and share more.

So dear readers, I thank you so much for sharing my journey with me and for your love and support. I leave you here with this final Girl with the Cyborg Leg post that bring you up to speed with what has happened to me since we last spoke.

But this is not the last I will write, for as I mentioned I am working on a book combining my story and all I have learnt about strength, resilience, gratitude and grit. I look forward to sharing more with you within those pages.

Until then, stay strong and never give up.

Sincerely,

The Girl with the Cyborg Leg

A Cyborg No More

As my parents and The Boy left my room the night of my de-cyborging operation, I felt a twinge of sadness and a bleak and stark loneliness pierced my heart. It is always this way when the day becomes night and it becomes time for my visitors to leave. I’m usually fine after I’ve settled into my nightly routine but that first moment when the door shuts leaving me alone is like a Band-Aid being ripped off and the sense of being alone is always fresh and raw.

After they left I closed my eyes. Tubes invaded my veins. Tentacles of poison. I couldn’t turn my neck with the central line. My eyes flickered. On the back of my eyelids a movie played just for me.

My ketamine visions had never been this beautiful. Visions of flowers, of muted light and picnics and fields at dusk. Of flying and floral head wreaths. The sort of aesthetic that wouldn’t look out of place in a Lana Del Rey film clip.

I lay still but in my mind I was dancing. Dressed in lace and cream I smiled at the man in front of me. I felt a surge of love as he held me close and looked into my eyes. Flowers littered the dancefloor and my hair. The light was soft and muted, yellowing in the afternoon. A Lana Del Rey film-clip starring me and my someday wedding. Bliss swirled and soared within me as the movie played out. Happy smiles, longing looks, sitting in a hotel room drinking tea and hugging, laughing with what looked like Europe out the window. A honey moon in Paris perhaps?

Despite lying a in hospital bed I felt really at peace. Full of love, at one with the universe, close to God. It felt like a supremely spiritual experience. In that moment, despite everything, I felt completely and utterly happy.

Peace flowed through my veins and the sadness and grief of the past few weeks fell away. I felt renewed, reawakened with a strength and positivity I hadn’t felt before. A determination and resolve to be a warrior not a victim and I felt ready to tackle this next hurdle.

I felt a strong calling, a voice, telling me I am on this planet to inspire people. For the previous few weeks I had felt so fragile, so weak, so uninspiring. All I had wanted to do was hide away but now I felt strong, ready to be brave and face this challenge with hope and optimism and inspire people.

I saw myself writing my book and getting it published. Doing motivational talks about resilience. And I felt happy, grateful even, for this experience. For the lessons it was and would teach me and for the opportunity and time to write my story that I might not have otherwise had.

I felt that spark of myself returning. That fire. That determination. I felt ready to be triumphant again. I thought about rehab the first time around and how good those small gains felt. How much growth I did and how I emerged triumphant and proud and I felt grateful for the chance to experience that all over again.

I lay there with a smile on my face, a fire in my heart and a hell of a lot of ketamine in my veins.

D-Day

The day of the operation to be remove my implant I was filled with an apprehension that fizzled through every fibre of my body. In truth it had been building ever since that appointment with Munjed. Each day it silently built. I tried to lock it into a corner of my brain I wouldn’t have to look at it but now it had become too large to ignore. Like a stack of papers it had reached such a height it threatened to crush me if it fell.

I had no idea what to expect from the surgery. How much pain would there be in the days after? It did involve ripping out an implant that had integrated into my bone after all. I couldn’t help think about the implant I had seen in Munjed’s office last year that had been removed from the only other patient forced to have their implant removed. The specks of bone still lay enmeshed in the metal. Thinking about it made me shudder.

In the waiting room I made jokes with the nurses, my parents and The Boy, trying to mask the nerves that were clawing at my insides.

I desperately wanted to leave. To be anywhere but in that bed dressed in the blue gown and paper undies. If I had a leg I might have run.

As they wheeled me into theatre I desperately wanted it to be over, to be waking up on the over side.

A bright and friendly anesthetist assistant with a colourful scrub cap and bold red lips chatted to me while they prepped the needles and prepared the concoction of drugs. Her bright lipstick was the last thing I remember before the drugs rushed forward to greet me.

A Glass Case Of Emotion

In the days that followed the devastating news I found myself on a swing; the upward push I would feel strong, positive, motivated, determined. Resolute in the fact that this situation had happened for a reason and focused on making this setback into something good. I figured if I could make it a meaningful experience, create a positive meaning out of it all then it wouldn’t be wasted time. Wouldn’t be such a devastating blow to come to terms with.

But then just when I felt I would not only survive, but conquer this obstacle, the swing would be thrust backwards and I would plummet down. I felt fragile. Like tissue paper where any small gust of wind would break me into pieces. Teary, flat and lost.

For the first few weeks I existed in a fog. I did the necessarily preparations for surgery and kept myself busy making plans and setting my mind to the new task. For months there had been so much uncertainty about my pain and at times it seemed like no doctor would take me seriously. Or they would simply throw another drug at the situation rather than look for the underlying reason. The uncertainty was the worst. But now I had a concrete answer. It wasn’t what I wanted to hear, the furthest possible thing but at least there was an answer and a plan to fix it. And with that came some relief.

But then the reality of the situation would hit. And I would feel paralyzed. What got me though was staying focused on the moment. Life was good in the small moments. It was when I thought of the big picture that I would feel the heaviness of doom, the weight of disappointment and the fears, doubts and worries crawl in. But in each moment there was joy. A good book in the sun. A delicious cup of tea shared with friends. Meals with my parents. Raw treats. And really all life is a collection of moments strung together.

But in saying that on the downward cycle of the swing there were moments where my heart felt like it was in a vice. I’m not sure if was the heavy antibiotics and other drugs I was taking or the stress or the weight of what lay ahead. Or a combination. It felt tight, heavy, constricting. Almost like a mini-panic attack of sorts. I felt paralysed and then like a rain cloud giving way all I would be left with was a soggy sadness. It fell upon me like a mist. I felt it damp upon my skin and it felt like I was breathing fairy floss. There were days where it was always there, not always in the forefront but it licked at the corners of my mind like a small fire burning the edge of a piece of wood. It could sizzle away undetected for a while until it demanded attention. When the sadness descended everything suddenly felt too hard, required too much energy. Suddenly just existing seemed exhausting. I struggled to do anything and then I would feel annoyed at myself for wasting time, for not functioning.

One day I was looking through photos from last year and seeing how happy I was, how good life was, brought me to tears. It was the best time of my life and I longed to have that again. Life made sense and nothing seemed impossible. I longed for the spark that lit up the face of the girl in the photo. It had been so long I couldn’t even remember how it felt to walk.

Part of me looked forward excitedly to that day in rehab when I again would take my first steps and how amazing that would feel, maybe even better than last time. And then part of me just felt sad for the life I once had in my grasp. It was all there, complete happiness and like sand it had slipped through my grasp. At the time it had almost felt too good to be true and in a way it now felt like it was. I knew I would get it back, I was determined to ensure that was true. But I also grieved for what was and what was now lost. 

I looked at my goals from back then or even a few short months ago and remembered how this year held such promise. That had all changed. I did still want to tick of those goals but life had also been simplified and it’s funny how much my goals had now changed. Before I wanted to climb mountains, compete in Crossfit comps, walk 10kms and while I still wanted to do these things they were suddenly less important. All I really wanted was walk. Walk without pain. To be able to walk around the house, the shops, walk the dog. Walk to class at uni and hold my boyfriend’s hand when I walk. That’s all I wanted. How simple and bland it would have seemed to the Miranda that first had this operation. And yes there is still time to be extraordinary but right now I longed for the ordinary. When you lose everything suddenly the extras don’t seem so important.

But I needed to let go of how things were supposed to happen or how I thought they would and embrace what they were now and make the best of this. I refuse to believe anything in this life happens completely by chance. There is a reason for all of this. I wasn’t quite sure what that might be but I was positive it would become apparent as this journey continued.

An in the meantime, there was still much joy to be found in the small things. In the small moments. One moment at a time I would make it through this.

Life Goes On

“Awful things may happen but they are no reason to fold in on oneself and self destruct. All things, no matter how awful, are survivable because we are as indestructible as we believe ourselves to be.” – John Green, The Fault in Our Stars

And I realized as I lay awake that first night after being delivered the terrible news, I would be ok. At every stage of this saga what I thought would be the worst possible scenario has happened. And I have survived. Sure it hasn’t been easy and there have been many a curse cried out to the universe but at each stage there has also been a sense of peace at the acceptance of the new reality.

It really is as simple as the saying “Life goes on.” Life does go on. No matter what. And we can still build a good life, a good day from the tatters and crumbled mess of yesterday.

Back when I first started getting pain and I had started my PT course the worst possible scenario was I would have to quit and move home. It happened and I was devastated but I survived and it even turned out for the best.

When I fractured my femur in December the worst possible scenario was I would have to give up Crossfit. And I did. And I was so angry and upset and thought life was so unfair.

But then I lost more. I couldn’t walk and I thought there was no way I could go to uni and meet strangers when I wasn’t wearing a leg. And I did. And I survived.

Then I got the IV and the picc line and was told I wouldn’t be able to exercise for six weeks. This was my nightmare, my worst possible fear. I would put on weight, be a lazy slob and all the good and hard work I had done would be undone. But I survived. And even had fun along the way. And now the ultimate worst possible scenario had happened and I would have to give up uni and go through the whole thing again.

Apart from losing a loved one I had lost everything. There was nothing left to give. But I didn’t feel anger this time. This surprised me. In December when I fractured my femur and they first found signs of an infection, I was so angry and frustrated and felt defeated. There was none of that this time. I think in it’s place was just sadness. Plain and pure. I felt really sad about all I had to give up. But at the same time there was a sense of hope. A feeling of peace. I needed a few days to grieve what I would lose but then I knew I would be ok. I knew it was going to be a tough journey and there would be good and bad days. There would be plenty of tears and despair but in that moment I felt strong. I felt a strength stirring within and I knew I could do this. I would walk out of this situation not just a survivor but a conqueror. Perhaps this was the plan all along. Yes it sucked but I never give up. Never ever.

The Appointment to Decide My Fate

It was too late to take back the words although I desperately wished he would. They coiled on the table in front of us, poisonous. I didn’t want to touch them. I didn’t want them to touch to me.

I had prepared for this outcome, but only in a vaguely abstract form, a worst possible scenario that couldn’t possibly happen to me. A nightmare from which you wake, clothes clinging to damp skin, but with the cool, soothing touch that it wasn’t real.

What is it about the human condition that somehow in a way we believe we are invincible? We all know people who have been touched by cancer, by death, by disease and illness and while it affects us, frightens us, horrifies us; somehow we never truly believe it could happen to us.

But there it was, the worst possible scenario, laid out on the table, no longer a scary demon of a possibility but a living, breathing tangible reality.

I couldn’t look at Mum who sat beside me. I could already fill the tears banging at the door of my eyes, demanding to be let in. I could feel the tears sitting at the base of my eyes. Like a bomb. Like a tiger waiting to pounce. Just keeping them in made them eyes glisten.

If I looked at Mum I would not be able to control them.

I shouldn’t have worried. The truth, his words, they sucked all functions out of me. I simply stared at him.

He sighed. He looked as defeated as I felt.

“I think we are going to have to face the fact that the implant has loosened and I am going to have to take it out,” he repeated.

The infection had not improved. Despite the pumping of savage IV antibiotics into my body for the past six weeks, they had been of little consequence to the beastly infection. What’s more the infection had killed enough of the bone to make the implant loose inside the bone. And yet still the infection sat perched on the tip of the implant, refusing to give up it’s position like an angry hissing cat told to get off the lounge. But it was ignoring the orders, refusing to budge.

My beastly infection in plush form

This explained the pain. And it seemed only in that moment when Munjed saw my face, my reaction when he applied pressure to the implant, that he believed me, believed the truth. Believed the level of pain I had described was real and was as bad as I was saying. Before I felt he had seen me as the girl who was crying wolf. But the wolf had been there all along just hiding out of his sight until now. Now it had stepped forward snarling, no longer to be ignored.

Mum and I had risen early for the appointment with Munjed. It had been a week since I had finished the course of the IV antibiotics and had my picc line out and yet I still could not take one step with my leg on without excoriating pain shooting up my bone. This pain was unlike anything I had ever felt before. It did not make it near impossible to walk, or allow me to walk with gritted teeth while pain danced up and down my leg. It made it impossible to walk full stop. There was no way I could take a step. It was not a pain to struggle through. It was a pain that stopped you dead in your tracks. There was no fighting through this pain, there was only surrender.

It had all started gradually and then suddenly like a sun shower sneaking up on you and catching you unawares then pelting down, soaking you.

It was the last week in February and for the first time since December, since my fracture and battle with a small infection, I felt back to my old self. Good as new. My leg felt great, my walking felt easy and effortless and my spirits were soaring. I was in love and the next week about to start uni and my next adventure. I may have overdone it with the walking on the weekend (old habits die hard right?) and the next day I was a little sore. I wasn’t worried. I was just getting back into things and perhaps I had been a little enthusiastic. I knew if I took it easy that day I would feel right the next.

And then two days later, during my orientation session at the university I felt a searing pain shoot up my bone. I felt like I was walking on a knife tip and putting any pressure on my right leg was agony. I sat and rested praying when I stood again the pain would have lessoned.

I had a bridging biology class that afternoon which I was attending to hopefully bring my struggling science brain up to speed before I officially started uni the following week. The teacher was dissecting a bone and a lamb’s brain that afternoon and the students gathered around the table as he wielded the scalpel and cut with surgical precision. I tried to stand with as little pressure on my right leg as possible. Trying desperately not to disturb the pain.

Dizziness snuck up on me like a light-footed burglar intending to steal my consciousness. I felt the room spin and become fuzzy, narrowing to a small tunnel.

‘Oh crap,’ I thought. Please don’t let me faint now. Not while he’s doing this. Everyone will assume I am fainting due to feeling squeamish around blood and body parts. Only I would know the truth.

I slipped to the back of the crowd and took a seat, breathing deeply and hoping desperately to stay conscious.

The spell passed leaving me with a throbbing headache as evidence of its brief appearance. I figured perhaps I just wasn’t well.

The next morning I clipped my leg on as usual and stood in front of the bathroom mirror cleaning my teeth. I felt the familiar dizziness return and the room began to sink away.

I called for The Boy to come help. He scooped me up, a concerned look on his face as he placed me gently on the bed where I remained until the spell passed.

I worried the fracture had returned. That my exercise session on the weekend had been too much too soon and I had reinjured myself. X-rays, and blood tests were called for. All came back fine. Once again my pain was a mystery. Like so many times before no one, no doctor, no surgeon, no physio, could explain my pain. And so it was ignored.

The week I started uni was supposed to be a period of excitement, new beginnings and new possibilities. And it was. I loved my classes, my subjects and meeting the vast array of interesting people studying with me. To my surprise there were plenty of students with backgrounds as surprising and diverse as mine and many were my age.

But ever present with me in class was a deep and unrelenting pain. I returned to walking with both crutches and could barely apply even the faintest pressure through my right leg. I walked slowly and gingerly with gritted teeth trying not to show to my new friends just how much a struggle each painful step was. Even sitting down brought no relief. I would stare at the tutor out the front of the room and their words would wash over me. While I tried to grasp at them and pull them close my mind was occupied elsewhere. It was taking all my strength to breathe through the pain. And each glance at the clock was a silent desperate plea for the minutes to slip by so I could get home and get this torture device of a leg off. Or if I couldn’t do that, at least let it be time for another pill. At the start of this journey I had been stoically anti-drugs. I resisted them and fought against them. But that week I gobbled them like candy. My days were reduced to four hour blocks of when I could take another pill. I took multiple types of painkillers like a desperate addict and took them dutifully every four hours even at night where the pain stole my sleep.

During class not only did I struggle with keeping the pain at bay it was also a futile struggle against the drug-induced drowsiness that pain killers bring. The sort of tiredness where just staying awake was a full time job. And yet in a bitter twisted irony, at night when no matter the amount of drugs I had taken, sleep eluded me.

But I was determined not to miss a moment of this first week of uni. I was too excited and so I struggled through, escaping the moment I could to return to the couch and pull my leg off. And even that provided little relief. Even at rest, without the leg, the pain danced up and down my stump. Sometimes sharp, other times crushing, like my leg was being twisted in a vice.

Heat packs were applied, drugs were swallowed and yet I could not rid myself of the pain. There was never a moment of relief. The only sweet snatches of relief was where the pain was slightly less. A five rather than a nine. My ‘happy’ spot was when I could breathe, concentrate on something other than pain and I wasn’t crying. Either than or asleep. It was not a sustainable life.

One night the pain was so intense, I became like a wild thing. Tears filled my eyes, I nashed my teeth and my whole body writhed. It felt like I had been hit with the torture curse, Cruciatus, from Harry Potter. I couldn’t lie down to sleep, it was so intense. The only mildly ‘comfortable’ position was sitting up. The Boy in his sweetness held me in his arms and stroked my head soothingly as he sat beside me in the bed until my head dropped and sleep greeted me. I felt a surge of love for him.

The surgeon rang to check up on me during that week. He was worried by the level of pain I was experiencing. He couldn’t logically work it out. He spoke of a possibility of the implant being loose and maybe needing to be removed but he mentioned it casually and not with any real seriousness. Like he had before he told me I needed to be sure of my understanding of the pain scale as what I was reporting was very high levels of pain which had him worried. He told me to come and see him the following week.

I like to think I have a fairly high pain threshold. After that Tuesday night spent sleeping sitting up, I didn’t think the pain could increase anymore. But a few nights later the pain could not be subdued. I tried to lie in bed to sleep. I tossed, I turned, this way and that. The pain made my body dance, it could not be still. I writhed and contorted. I tried to sit, maybe that would help. It did not. I cried out, a strangled verbal incantation of the physical pain. I stood and bent over the bed searching desperately for a position that would lesson the pain even just a fraction. Even for just a second.

A new wave of pain gripped me and I couldn’t contain it, a primal scream escaped my mouth and my parents burst into my room with looks of part concern and part panic.

I cried out again. I wished desperately to be able to leave my body to watch it from above and take a break from this hell.

“That’s it, this can’t go on. We have to take you to hospital,” Dad announced. I had no energy to disagree even if I had wanted to. All I wanted was for the pain to stop.

I felt like a mother in labour as we sped through the dark to the hospital. My parents in the front, me in the back trying to breathe through each contraction of pain which gripped my leg. The streets were empty. The lights in the windows of the houses we passed were dark, their occupants long asleep.

We were seen by a triage nurse immediately who asked a series of questions with a clinical yet concerned precision. My story, my history, felt convoluted and exhausting as I explained how I had ended up here. I just hoped I would be deemed serious enough to be given a bed and not have to wait with the dozens of people sitting outside in the waiting room.

Thankfully I was and I was wheeled to a bed where I was left for a considerable time. Nurses walked by but they bowed their heads or looked the other way in an attempt to ignore me so none of them would have to stop and do something.

More tests followed. More scans. More sleepness nights. All the while the pain danced its wicked dance and laughed manically.

I was admitted to hospital after they discovered a staph infection raging rampant in my femur and on the tip of the implant. Munjed, along with the Infectious Disease doctor were positive that after a good course of IV antibiotics it would clear up, the pain would subside and I would be able to walk again. I was prescribed a course of six weeks IV antibiotics through a picc line.

Munjed had been worried. He spoke of operating, debribments and a long hospital stay but he was hopeful. Positive this infection could be brought under control. I was devastated by the hospital stay which meant I had to miss my uni classes and would fall behind. All I could think was how it was the worst timing, here I was just starting my course, my new life and now I had to be yanked from it into a hospital bed. I brought my anatomy and biomed textbooks with me and studied as much as I could but the constant nausea and headaches brought on by the antibiotics made memorizing bones, muscles and cell functions difficult. The ward doctor joked he could take me downstairs for some hands on experience.

But despite what I was missing I rejoiced in the simple fact the drugs had silenced the pain. After weeks of unrelenting pain, of never a still and peaceful moment, this was blissful. I slept for the first time in weeks and smiled at just being able to lay, sit, exist without the pain twisting and contorting itself around my leg.

Being an amputee on crutches while attached to an IV pole brought its challenges. Trying to crutch to the bathroom while dragging an IV pole was impossible so I invented a swirl type of dance where I twisted my foot and my hips back and forth to be able to move across the room. There was my exercise for the day but I felt triumphant being able to have this small independence.

And Munjed and the Infectious Disease doctor seemed happy. They were pleased with the drugs attack on the infection and confident they could win this battle. I wouldn’t need an operation and they were hopeful I would be able to walk without pain in a couple of weeks.

But the best news was I wouldn’t have to spend the six weeks while I was on the IV antibiotics in hospital. I would be able to have a portable bottle which I would change daily. This meant I would still be able to go to uni and live a life which still somewhat resembled normal. Albeit one where I carried around a bottle of IV antibiotics in a bum bag and was attached to me via tubes in my arms.

Rocking some sweet Picc line IV fashion

The catch? The only hospital that offered this service was the John Hunter Hospital in Newcastle which I would have to visit regularly throughout the six weeks. It was close to uni which worked well and The Boy just so happened to live around the corner from both. The plan was I would move into The Boy’s house for the six weeks. I was nervous. We had only been dating for a few months, was our relationship ready for this? Was I ready for this? I was nervous how I would go attending uni, studying, cooking meals for us and his sister and daughter who also lived there, all the while being on crutches with a picc line. I cried as I hugged mum goodbye. She was going to visit me every Wednesday to help out with the washing and to hang out, but still I wasn’t sure how I would cope without her.

But The Boy had been so sweet and caring. He had stroked my hair and wiped away my tears when I was in the throes of pain. He brought me fruit salad, movies and magazines whilst in hospital and offered me support in all forms.

This would be a good test for our relationship.

And a test it was. We had only been dating five or so months and suddenly he had to take on an almost carers role. In addition to changing my IV, helping with the food shopping, he had to help me shower. I was a tangled mess of cords and I needed his assistance to bag my arm to avoid any water on the site and to carry my IV bottle and hang it over the showerhead. I had limited reach with my right arm as there was only a small distance that the tube would allow me to reach and he had to pass me bottles of shower gel, face wash and shampoo. It was humiliating. I had always been so fiercely independent and here I was handing it all over to someone I had known a few months. While we should have still been in the carefree, honeymoon phase of our relationship, suddenly things were accelerated at warp speed. To his credit, he was brilliant. He adapted without missing a beat and seemed to thrive on being able to be there for me and help. He was very sweet. When I would have a bad day and feel frustrated by the constant nausea that the IV antibiotics gave me or fact that even the simplest task required such effort, he would hold me in his arms and tell me how strong I was, how much he admired me and how much he loved me. He tried best he could to make things easier for me and to keep my spirits up with small gifts and trips to my favorite cafes.

I had never been so disabled. Not only was I on crutches, not able to wear my leg and walk, with the picc line in I now had limited freedom of my arm. With the line in I wasn’t able to do any task that put stress on the muscles of the arm and required them to tense. Otherwise the line would rub on my vein and cause pain and discomfort in my arm and shoulder. Being on crutches made this difficult, as there was no alternative to having to tense your triceps and biceps with each step. This meant no gym for me. No exercise at all. For six weeks. I was horrified. Devastated. Scared what this would do to my body and my mood.

It was one of my biggest fears and here it was a living, breathing, tangible reality. But it’s funny so many times I have been confronted with my biggest fear and worst possible scenario. At first you don’t think you will possibly be able to survive but then somehow you always find the strength. A hidden reserve you didn’t know you had.

In saying this, without exercise my body felt tired, lethargic and without movement and in conjunction with being on crutches, ached like the body of a 90-year-old woman. I felt my taut and toned body I had worked so hard to achieve soften around the edges.

During the nights where I would be feeling particularly self-conscious at my more rounded form The Boy would pull me into his arms and tell me I was beautiful and looking into his eyes I believed him.

And so I fell deeply in love with this beautiful man with the kind eyes and words of encouragement. It was such an incredibly tough time and yet with him by my side it was also incredibly happy. And even though things were not to last with us I will be forever grateful for the light be helped provide in what could have been such a bleak time.

Despite being on crutches with a picc line I was determined to push through and continue with uni. My uni lecturers gawked at me when I said I would continue and were very kind an accommodating, as were my new uni buddies.

But it was tough. Along with the infection fighting ammunition the drugs left me feeling constantly nauseous and fatigued. My head was fuzzy like the world was coated in fairy floss and my eyes felt scratchy and strained. Trying to study would at times reduce me to tears as I tried to absorb the words while my head pounded and stomach churned. Like a pregnant woman I had to eat every few hours to keep the nausea at bay. But still I continued on.

 

Each week with hope I would try the leg on and see if the pain had disappeared and I would be able to take a step. But like the ugly stepsisters trying on Cinderella’s shoe no matter how much I willed it, this leg and I were not going anywhere together.

The moment my foot touched the ground an excruciating pain would rocket up the bone and vibrate throughout my whole body. This was not a pain to push through, this was a pain that stopped you dead in your tracks. I couldn’t rip that leg back off fast enough.

Each week it was the same and with each passing week as the six weeks became closer and closer to being up, the hope began to fade and the dark reality of what this might mean loomed closer.

And so Mum and I found ourselves in Munjed’s office that Thursday morning in May.

For minutes he had stared silently at the x-rays lit up on his screen. The silence stretched painfully, each second he didn’t speak correlated with the acceleration in speed of my pounding heart.

And then his verdict. His defeated look. The tears, mine and mums. The worst possible scenario. The implant had come loose. It would have to be taken out. I would have go through the entire osseointegration process again. Move home. Defer uni. My brand new life stopped in its tracks before it had really even begun.

 

 

Happy Anniversary Cyborg Leg

Six months ago to the day I took my first steps with my new hardware. Day by day yo can’t quite see the progress but looking back it is incrediable to see how far I have come. The difference is incrediable.

Six months ago four laps on the parallel bars was exhausting. A task akin to running a marathon. To celebrate my leg-a-versary Mum and I went for a four km walk. Something pre-surgery I would never have voluntarily done, let alone for fun.

And then dinner with the family at Supermex. The last time we were there I was legless. Not from too much sangria but rather I was on crutches two days out from my first surgery. There was a large flight of stairs to navigate and it was a mission.

Tonight the stairs don’t even factor in in the slightest.

That night nine months ago feels both a life-time ago and yet like it was only yesterday.

That Miranda nine months ago, or even six months ago had no idea what was coming which makes the prospect of my one-year anniversary even more exciting. Who knows what life has in store next…

It’s Actually Happening

A few days passed and I hadn’t heard anything back about Florida. Was it all just a beautiful dream?

But I am strangely calm about it all. If there is one thing this whole journey has taught me is to trust that it will all work out. What ever will be, will be. If it is supposed to happen it will evenuate. If not then it wasn’t supposed to happen.

But then the call came.

“Hi Miranda, it’s Mark. I’ve booked your flights, you leave Wednesday week. I’ll send through the confirmation details and I’ll see you there.”

I hung up the phone and turned to Mum and grinned.

We both laughed and squealed. I’m going to Florida!

What a crazy adventure this cyborg life is.

“Who knows were this leg is going to take you,” Dad remarked later that night.

Cyborg life is exciting like that.

 

Can You Believe It’s Been Nine Months?

“You’re femur looks longer,” Dr Al Muderis remarks as he peers at the x-ray.

“It looks like it has moved.”

I’m confused and slightly concerned.

“What do you mean? Is that possible?” I ask puzzled.

Bones don’t just move do they? Surely I would have felt that?

“I’m not sure. Maybe it’s just been a while since I’ve seen your x-rays,” he responds.

“There’s some very good bone growth from the weight baring.”

He smiles.

“I’m very happy.”

Mum and I grin at each other. This is great news.

I can’t believe it’s been nine months since I had my first surgery. It feels surreal really. It feels simultaneously like it was only yesterday I was nervously being wheeled into that operating theatre and yet at the same time a life-time ago.

So much has happened between then and now. So much has changed. I was a different person back then. Mentally, physically, emotionally: the difference in the Miranda who first embarked on this cyborg journey and the Miranda that writes this today is remarkable. Looking back and reflecting it is mind-blowing.

And I have to say I love it. I quite like this new improved Miranda 2.0. I often find myself almost having to pinch myself that I could be this happy. That my leg could feel this good. It hasn’t been an easy journey and there is still much ahead of me, but boy am I glad that I stumbled upon that brochure almost a year ago.

A year ago I had no idea of this surgery. I had no comprehension of the dramatic turn my life was about to take. Thinking back on this makes me incredibly excited for the future as we really have no idea just what exciting adventures are in-store and on the horizon. Life can change in the blink of an eye.

“How’s your hip going?” Dr Al Muderis inquires.

I tell him there has been no dramas, no real pain.

“Good, we’ll leave it then. If you haven’t had any pain by now it looks like you could be set for life.”

I grin. This had been the biggest gamble about me having this surgery. It was the great unknown and from day one I had been warned ‘I would piston and I would have hip pain,’ but (touch wood) none of this has eventuated.

I do like to prove people wrong after all.

It’s kind amazing what the human body is capable of.

“So are you going to the conference in Florida?” He asks me.

A couple of weeks back when I had called Dr Al Muderis about a cyborg leg related matter he had raised the possibility of this trip.

The conversation had gone something like this:

“I would like you to go to an Amputee Conference to talk about your story and the surgery. Would you be interested?”

“Of course,” I had replied.

“Oh good. It’s in Florida at the end of the month.”

I think my heart had stopped beating for a second. I worried I had heard incorrectly but dared not clarify in case I had.

“Oh awesome, that sounds great,” I responded in what was probably the biggest understatement of the year.

Florida! I pinched myself to see if I was dreaming.

“Good. We’ll see if we can organise the funds and someone will call you in the next couple of days.”

But then a couple of weeks had passed and I hadn’t heard anything so I thought perhaps it was something that wasn’t meant to be this time around.

But here it is raised again. I dared not hope.

I told him I hadn’t heard anything from Mark, who works for Orthodynamics which is the company that manufactures the implant in my femur.

He pulled out his phone and immediately dialed the number.

“Mark its Munjed. Miranda wants to go to Florida. Yes she’s here, I’ll pop her on and you can organise it.”

My heart quickened like a teenage girl at a Justin Bieber concert.

He explained that since Osseointegration hasn’t been FDA approved and is still in clinical trials in the US that we weren’t allowed to openly promote the surgery at the conference. The keynote speaker is a surgeon who is wanting to launch the surgery over there and wasn’t too keen on Dr Al Muderis speaking or presenting any competition.

So we had to be a little sneaky in our approach. We would go over under the banner of of Mitch’s gym, Good Vibe Fitness. We would focus on the importance of fitness and keeping active for amputees. And it would just so happen that Mitch, myself and Fred (who had recently come over from the US for the surgery and had been training with Mitch) would all have had osseointegration and we could share our personal stories, our experiences and our triumphs and successes.

He said he hadn’t contacted me as he wasn’t sure where I would fit in the with the fitness aspect.

I laughed a little. Fitness, me? Well it’s pretty much my life. I explained that I train at the gym three hours a day, have rock-climbed, done my first 5km fun run/walk and was just about to start my Cert 3 in Fitness.

“In that case I’ll look into some flights today,” he said

And that was it, I was in!

But until I saw the official confirmation I dared not yet believe it was actually happening.

I couldn’t be that lucky could I?

In what now seemed like perfect timing I had arranged to meet Mitch at his gym that afternoon as he was hoping to take some photos and footage of me working out to show on a screen at the conference.

I excitedly told him I would be joining him in Florida and he grinned before handing me a Good Vibes shirt and putting me through my paces doing some strength and cardio exercises that showed off the leg’s capabilities.

Ah my second fitness shoot. Now I just need Woman’s Health to give me a call.

Since day one we had heard nothing but how amazing Mitch’s recovery and journey to walking had been. While we had been told not to compare ourselves we had constantly heard how Mitch pretty much just strapped the leg on and away he went. A few weeks later he threw the crutches away and that was it. During those rehab days oh how I envied him. Chris would constantly tell me not to compare, that everyone was different, my journey was my own. I knew he was right but at the some of the time I would find myself only half listening as my my inner negative voice chirped away telling me I wasn’t good enough, working hard enough or strong enough.

But talking to Mitch today he told me he wished he had stayed on the crutches for longer. He had thrown them away on a boys weekend to Melbourne but really should have used them for longer and he had noticed a difference in his walking.

This was a surprise. That first day back at the clinic nearly a year ago when I had met him he had made walking seem so simple, so blasé and here he was telling me that it was important to take it slow and not rush things.

I had just days ago been again beating myself up for not being further progressed after seeing the videos of Fred walking. He was only 20 days with the leg and he was already walking to what I perceived to be better than me. I couldn’t help it but I cried when viewing the footage. I had felt so inadequate. Just the day before I had felt so elated with my progress and then like a ton of bricks slamming down I realised how far I still had to go and perhaps I wasn’t doing well enough. I worried I hadn’t achieved enough. This has been a common theme for me throughout my life, not feeling good enough. Not being ‘enough’. I have come a long way but there are still days when the doubts weight heavy.

“Everyone is different and how long they need the crutches for really well depend,” Mitch said sagely.

“It’s not a race. Or a competition.”

He is right. No one is scoring us. There is no medal for walking unaided first. They are happy with my progress and I’m making progress and getting stronger everyday. Already I am able to do so much more than I was six months ago and more than even before the surgery.

I need to focus on my achievements and what I can do rather than what I can’t do and what I still need to work on.

This is the key not just to cyborg life but happiness and life in general. Be grateful for what you have rather than sad about what you do not.

I had been emailing and keeping in touch with Fred throughout his whole journey and surgery process and was looking forward to finally being able to meet up with him in person.

Mum and I gatecrashed his physio session. It was strange, we had just met this guy and yet we were privy to what was something quite personal but it didn’t feel awkward, forced or unnatural at all. It almost seems like there is this unspoken bond, this understanding between us cyborgs. We are part of an elite group after all.

He’s a pretty incredible guy. He started looking into the surgery a couple of years ago, organised an event for Dr Al Muderis to speak to amputees in the US and then came out for the surgery this year. He and his daughter have been living in Mosman for the three months he is over here and he travels across the city to train with Mitch and for physio via public transport in his wheelchair. Not an easy feat when you are in another country and recovering from surgery. He has lost about 20kg since training with Mitch and like me this surgery has completely changed his life. Like my journey it’s not just about the leg. The flow on effects this surgery can have is just incredible.

Nine months ago I was heading into surgery unsure how it would all turn out, now I have quit my job, have a whole new life purpose and am heading to Florida to talk to other amputees about it.

Who would have thought? If this can happen in just nine months, what does life have in store for me next?

I’m back!

Firstly let me apologize.

I should have written this earlier. Weeks, no months ago.

I am terribly sorry for the lack of posts of late.

I had so loved and enjoyed the process of blogging my way throughout this whole journey. I loved being able to look back on my posts as a record for myself and I loved being able to share my story and connect with others.

I found it a therapeutic way to sort through my emotions and feelings and would often surprise myself with what came out. I once read a quote ‘I don’t know what I think I read what I have written’ And I have to say I find this  quite accurate. Writing helps clarify my feelings and helps to sort through the tangle of thoughts, they are easier to deal with when they are nicely arranged and packaged into neat little sentences.

But like when I originally set out to start this blog life simply got in the way.

I was ejected from rehab and within a few days catapulted back into real life. It was an exciting time but also an incredibly busy and at times overwhelming time.

While rehab certainly hadn’t been an easy ride there was a certain sense of safely of being in there. Chris had told me before I left that often patients were nervous to leave the security and routine of the place. I did identify with this to a degree.

In a way I feel it was a similar feeling to when I was at university. I was working hard and doing my best to achieve my goal for the next stage of my life but at the same time real life hadn’t started yet. It was a safe bubble of time where the future glittered and shimmered with possibility just ahead of me.

And then the real world hits. My days had been so ordered and organized and then real life came along like a bounding slobbery dog and suddenly life was chaotic and not at all neat and orderly. It was an exciting time, don’t get me wrong but it certainly was an adjustment.

I missed Chris terribly. I missed being able to talk through anything and everything with him. He understood all the things that come with being a cyborg and had been such a huge part of my journey.

I missed his guidance with my walking and his constant support and encouragement. I missed his friendship and I even missed him telling me to ‘take it easy’.

I missed my daily gossip sessions and chats with Nicole.

And I missed being able to work on my physio exercises three times a day.

But the hardest thing was how tired I was all the time.

There were days where I would be so completely exhausted and drained staying awake was physically painful. Like Fifi Box remarked once, I was too tired to blink.  At times I didn’t even have the energy to talk.

I worried that I was a failure and not strong enough as the other cyborgs didn’t seem to be this low in energy and this utterly exhausted and drained by everyday life.

But in saying that I was working out for two hours at the gym as well as an hour of physio each morning on top of working full time in a stressful job with constant deadlines. And then there was all the socializing to catch-up on. Five months away from my friends, there was a lot of ground to cover.

And I discovered I was low in iron so the tiredness wasn’t entirely cyborg leg related.

But between the exercise, work and socializing and heavy weight of exhaustion there wasn’t much time nor energy left over for writing and blogging.

I fell behind. And then I fell even more behind. And suddenly I was so far behind the enormity of the task of catching up on all the posts I had missed loomed so huge in front of me it was easier to hide in the corner.

I still had been writing notes and bits and pieces but no proper fully formed posts. Just skeletons really.

And the more the days went by the more and more daunting the task seemed. I felt paralyzed whenever my fingers touched the keyboard.

But the guilt of not writing weighed heavy around my neck and followed behind me like a dark shadow as each night I hoped into bed without updating my blog.

My perfectionist nature kicked in and I was afraid of my blog not living up to the expectation I had established in my mind and I simply couldn’t start to write again.

The guilt and pressure was too much. I felt like I was being squashed under it, like an obese elephant had taken up residence on my shoulders.

So consumed with guilt and worried that I had failed, really I was just sabotaging myself in not writing.

The longer it went the worse I felt about myself and the more people asked about my blog the guiltier I became.

But it’s time to just bite the bullet and launch back into it.

So many incredible things have happened throughout the past four months, I can barely believe it.

I have been filmed for a story on Totally Wild, appeared in the Fernwood magazine, had the weekend cover story in the Sunshine Coast Daily, and been contacted by Lorna Jane to share my story.

It’s also been a huge time of transition for me, from rehab to real life, back into work and the gym and sharing my story with my co-workers and gym friends. Most have been incredibly supportive. Some haven’t. One particular girl who I considered one of my best friends was particularly nasty, constantly making snide comments to my face and then viciously talking about me behind my back. The fallout was very unpleasant and incredibly upsetting. Seems not everyone likes a cyborg.

But I have also been blessed with new friends who rather than tear me down like she did, they constantly lift me up and support me.

On the leg front, I could not be happier. I have already ticked off two of my cyborg goals, I have returned to the gym in almost full capacity and more and I completed my first 5km fun run/walk three months ahead of schedule.

 

I have trained with Commando from Biggest Loser and made Michelle Bridges cry when I met her and told her my story.

I sometimes have to pinch myself at just how incredible this leg has made my life. Gone are the days of constant pain and rubbing and bulky sockets. While there have been painful days and moments it is not like before. My leg gets sore but it’s more like a muscular sore just like when you have completed a tough gym session.

I am loving being able to wear exercise tights and any type of pants I want.

I love being fit and mobile and more active than I had ever imagined.

I thought I was happy before. I think I even wrote earlier in the blog just before I left for the surgery that my life was pretty much perfect.

But I have never been happy like this before. I feel like I have become the person I was supposed to be. I feel like my life makes sense and I am on my true path.

Physically, mentally and emotionally I have changed and for the first time in my life I truly like myself and accept myself.

After years of hiding my disability I want to embrace it and celebrate what my leg or lack thereof, is able to do.

And so the life changes keep coming. Returning to work I realized that this job in the media, this world of gossip and entertainment reporting no longer was my passion, it was no longer the right fit for me.

I want to help people in a more tangible way. I want to inspire people, help them to find their true selves and live their best lives. Like how Chris helped me.

And so I have quit my job and decided to return to uni and become a physio as well as get my Cert 3 in Fitness as health and fitness as become a huge part of my life and one of my greatest passions.

A pretty dramatic career change right? It’s not going to be easy but it sure will be worth it. And since when have I ever shied away from hard work?

My last day is tomorrow and then my next adventure starts. It will be sad to close this chapter of my life and if nine months ago someone had said to me I would do this I would have laughed in their face and told them they were crazy. But it feels right and exciting.

Oh and I’m off to Florida next week to attend the USA Amputee Coalition Conference in Orlando along with Mitch, Fred and Mark from Orthodynamics.

But more on that shortly.

Cyborg life sure is exciting!

So the plan is this, I will continue to blog this crazy adventure each day but I will also work on catching up on the posts I have missed as there is still a lot to fill you in on. So don’t feel too cheated. I will flash back to these shortly. Better late than never right?

But for now I will keep on top of everything that is currently happening and get back to updating regularly. Please forgive me for the delay.

Sincerely,

The Girl With The Cyborg Leg