2016 in Retrospect (Part 3 – My Near-Death Experience)

My time in Cambodia had kicked off the year on a high. Things were fairly normal after I arrived back in Brisbane in early February and returned to what was meant to be the final year of my masters degree. It was in early May that things took a sudden turn…

I came down with tonsillitis, which happens quite regularly for me. This is strange, as I had my tonsils out when I was a kid. Unfortunately my tonsils are as stubborn as I am, and they had grown back without my knowing it. I was wondering why I kept getting a sore throat until I discovered a few years back that those sneaky little suckers had returned.

Anyway, this time, the tonsillitis was particularly bad. I developed an extremely high fever, and couldn’t urinate despite feeling like I was going to explode. So I went into the emergency department of Princess Alexandra Hospital where they gave me some meds and kept me in overnight for observation. When I woke up the next morning, I soon discovered it was not the next morning, but about ten days later.

I was in the Intensive Care Unit with a tube down my throat and surrounded by machines. Strangely the first thing that told me something was not normal was when I opened my eyes and saw my mother sitting there. What was she doing there when she lives in another state? Eventually I came to understand that I had been in a coma for almost a week, and that the tonsillitis had triggered something much more serious.

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The viral infection that caused the tonsillitis had triggered a relatively rare syndrome called Guillain-Barre Syndrome, where the immune system starts to attack the myelin lining of peripheral nerves. About one in 100,000 people get it, and they still don’t know why or what exactly causes it. I actually had a variant called Bickerstaff’s Brainstem Encephalitis, which is what put me into a coma.

After waking up, my motor control in my upper body was very poor, and I could not move my legs at all. Below is a photo of my handwriting on an etchasketch that I used to communicate, as I couldn’t talk while I was still on life support:

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It says “Makes me so happy”.

It was still a few more days before I was able to breathe on my own without the machines, and I can’t describe how good it felt when they finally pulled that tube out of my throat! Mum told me that while I was in a coma, she asked the doctor “Is he gonna make it?”, and the doctor replied “At this stage, I can’t say”. Heavy!

Anyway, I wasn’t gonna give up, even if I wasn’t conscious at the time. I’m not done yet with this life!

Soon I had recovered to the point that I didn’t need to be in ICU anymore, so they moved me to the neurology ward and quickly after that to the rehabilitation ward.

In the 6 weeks or so in rehab, I slowly regained the function in my lower body, and went through the tedious task of learning how to walk again. At first, the big achievement was to be able to transfer myself from the bed to a wheelchair.

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Then as the strength returned and I relearned how to control my legs, I was able to get around with a “rollator”.

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And finally I graduated to crutches.

Once I could get around on crutches, they let me out. FREEDOM! Two months in hospital is not anything I’d recommend to anyone, especially in the rehab ward where the next youngest resident was almost twice my age!

Since then, I have made a full recovery but for one thing…

About ten days after returning home, I started experiencing a visual disturbance. It intensified to the point that for most of the day every day, I was unable to see clearly. It was not that I didn’t have sharpness in my vision, but it was like looking through a dirty windscreen and driving into the sun. Some areas were obstructed by bright patches.

After many tests and trips to the neuro-opthalmologist, I was told directly “we’ve put you in the too-hard basket”. It seems somehow I have sustained damage to my optic nerve, and the optic nerve does not regenerate in adults. Not good for a photographer!

Thankfully, I’ve discovered that it’s strongly affected by my body temperature. So if I can keep cool any way possible (not exerting myself, drinking icy drinks etc), it reduces to a workable level. I also tend not to have it at night time, apart from on particularly hot evenings.

Needless to say, all of this has affected my studies, and I’ve had to extend my Masters degree one more semester. I’ll be done in May, but now with this issue of my vision, there’s a big question mark over what the future holds for me. Will I be able to make a living with my photography? If not, what other options do I have? The sudden appearance of GBS has changed everything! But I’ve come too far to change paths now. I just need to find a way to make it work. One thing I learned as I was regaining the function of my limbs is that I am more determined than I had realised, and that determination will take me on to good things in the future. I’m not the kind of person to just throw my hands in the air and give up when it gets hard, even if I have my little moments along the way. Stay tuned, I’m sure there’s an exciting development just around the corner…

PS. Photos are by my wife, who was absolutely amazing through the whole thing. I was amazed at the strength she showed. She is the reason I look so happy in the photos (apart from the one when I’m in a coma)!

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