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ABOUT

In September 2010 I discovered I had a month to live. I had a large benign brain tumour that was applying so much pressure to my brain stem my heart would stop. I would need an emergency surgery......

This surgery was more complex than anticipated, I was under for 13 hours. I didn’t wake up from my induced coma until about 10 days later. Upon waking, I discovered I couldn’t talk and was paralysed from the neck down. I was extremely unwell, (a massive understatement), and the truth is I wasn’t expected to survive. But, here I am.

So after my emergency surgery to debulk my brain tumour what  exactly happened?  Well the result was not pretty!  
Upon waking from my coma I discovered that debulking the tumour created massive complications.  Here’s a list, (yeah, it really was that bad!):

 

  • Paralysed from the neck down

  • Unable to talk

  • Inability to swallow

  • Inability to cough

  • Extremely ataxic

  • Wrecked vestibular system (i.e. no balance)

  • Partially sighted

  • Partially deaf

  • Loss of co-ordination

  • Oh and a diagnosis of Multiple Sclerosis during my recovery too!
     

Nobody knew how much of this was permanent or how much recovery I was expected to make.  So as soon as I was medically stable I was shipped out to a neurological rehabilitation centre.  Here I would learn to talk and start learning to walk.  I discharged myself after 3 months, I needed home and some ‘normality’.

Learning to walk again wasn’t easy.  If you think about it, nobody teaches us this.  It is just something we instinctively know how to do as toddlers.  So, I spent between 9 & 12 hours a week doing specialist neurological physiotherapy.  The intensity and continued repetition of pattern of movement helped make it more natural.  I graduated from a wheel chair to zimmer, then holding on to somebody to nobody, (yippee, go me).

During this time I also did some vestibular work.  The vestibular work included things like hanging upside down off the end of my bed until I was sick.  The purpose of such a hellish activity is to remind the brain which way is up.  It works.

At my illest I weighed approximately 41kg.  I was malnourished as food was limited.  I had to learn how to swallow again.  I’m happy to report I can swallow now and am the healthiest I have ever been my whole life!  I have recovered the cough reflex too.  Massive relief as I had to get ‘suction’ a few times a day to clear my chest.

I’ve had a few surgeries on an eye.  It was very poorly for a long time and I had to wear a patch.  Who knew I’d be a real life pirate ;0).  It is much better these days but I still have limited sight in it.   Fortunately my opposite eye works perfectly.  I am still partially deaf but honestly, I have adjusted beautifully to these impairments.

When I was starting to make ‘real’ progress I became unwell again.  Loss of vision, (almost completely), extreme fatigue, poor balance......turns out my tumour had started growing again *and* I had MS.  To say I was shocked would be a total understatement.  The diagnosis explained a lot.  During my recovery I would often take 10 steps forward and 20 back.  Stero-tactic radiotherapy and a large dose of brave pills later…………I didn’t once give-up.  I persevered because honestly I always knew I’d find a way.  I had the odd wobble, occasionally doubted, but deep down I felt like I was on a mission.  A mission to prove I could make the impossible possible.  So,  I did that and I couldn’t be more proud of my achievements.  I have not done it alone.  I have had ENOURMOUS support!!!

At some point during my recovery I realised that this wasn’t just about regaining my health, it was also a journey of self discovery.  I found my inner bad assery, rebuilt myself the way I always wanted to be.  I found a strength and resilience I never knew I had:

“Find the warrior within you and listen to what she says: I am free.  I am cosmic.  I can change.  I am my own brand of beautiful.  I am calm.  I am grounded.  I am worthy.  I am a field of wild flowers.  I am ecstasy.  I am capable.  I am confident.  I can follow through.  I am electric and empowered.  I am a f*cking winner.  I am messy and perfect.  I can make outstanding decisions.  I am an alchemist, creator and magic maker.  I am love.  I am the sparkle in the darkest dark.  I am life.  I am me and it is enough”
(Thug Unicorn by Tanya Markul)

This journey of mine has taught me such a lot.  I have met the most incredible, inspiring people.  Every single person that I’ve crossed paths with as taught me something, showed me a new way or reminded me exactly who I am.  I love the woman I have become.  She is strong and powerful.  A woman unafraid to be herself.  A woman empowered by her incredible body.  A woman that has been to hell and back.  A hell that almost broke her but not quite.  Today she stands strong, bold, perfectly imperfect, worthy, enough.

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