An update and a farewell for now

img_1118-copyLying 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.

aa8d41f91cf78e46d84745fa93cccf76The 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.

img_1068One 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.d13e2e1b8c9810e9f79339c7774b96bd

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.

0146d851e4de3341d3902fdad4e57c1bAnd 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

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