Monday, March 21, 2011

EIGHT DAYS, SIX LOTS OF NEUROSURGERY, ONE LIFE FOREVER CHANGED


The year 2000 started as any other year of my University years, with excitement and anticipation. However, on Sunday, March 5th, about a week into it, I rang my parents and told them that they needed to come down to Wellington quickly as I was going to be having surgery the next day to replace the ventricular peritoneal shunt (that I had had in my brain draining fluid in my brain since my 1st lot of neurosurgery in 1994) that was blocked.

On Monday things seemed to be ok and I was able to talk with Mum and Dad while I was in hospital. The neurosurgeon told them that they couldn’t replace the shunt until it blocked completely though, and I was discharged.

Thursday (March 10) I awoke with a horrendous headache and vision problems. My parents took me to hospital where I had a CT scan and x-rays which showed that the shunt was completely blocked. At 7pm I went in for surgery where they tried to remove the original shunt, but I had a bleed in the brain so they had to leave the shunt in and I was discharged the next day as things seemed to have settled down.

On getting back home I slept solidly until 5pm then woke with an explosive headache and vomiting and Mum and Dad rushed me back into hospital.

At 10pm they did a 2nd operation and inserted a 2nd shunt. I came out of that surgery with agonising head pain, an extremely high temperature, blurred vision and vomiting. A CT scan was done and then I was taken back into theatre for my 3rd operation in 6 days where a new type of shunt was put in.

During this time my sister, who was holidaying in Zanzibar, began returning home and my brother came down from Waiuku. Several extended family members also came down from Auckland, things were not looking good.

At lunch time the next day terrible news came through – the new shunt’s catheter was too soft and had a kink in it. I had had my lunch and so they had to wait until 6pm to operate again.

The following day (Saturday) a CT showed that hydrocephalus (blocking of the ventricles) had returned and in the afternoon they operated again and put a shunt in the left hand side of the brain.  

I was extremely agitated after this surgery and had to have my hands tied down to the bed.

A CT scan in the evening showed that the new shunt wasn’t working so they did another operation (the 6th) and put an external drain, a tube right through the top of my skull, to the outside. They kept measuring the angle against a level on the wall so it could gradually be adjusted to force the new shunt to work.

A few metaphors that Mum and Dad used to describe what was happening at the time were being put in front of a firing squad, and getting last minute reprieve, Walking along a cliff edge for a week, or being a boxer and just as you’re starting to get up, getting knocked down again.

When I woke from the last operation my Mum and Dad were terrified that I might be severely brain damaged from it all but when the nurse had asked if I knew who they were I had answered “Yeah, Patsy and Frank”, and they knew that I was very sick but still mentally able.

I was completely irrational for most of the Sunday, wide-eyed, talking nonsense about Mozambique (there was mass flooding over there at the time), and how I was taking people wheelchairs, along with lots of garbled nonsense about cooking.

The pastor of Mum and Dad’s church had come down on the Saturday and read me some scripture that I appeared to be listening to very intently. When he finished my comment to him though, was “You know you’re going to need a lot of salt with all that” - clearly I wasn’t all there!

So, six lots of neurosurgery in eight days then many weeks of recuperation to follow.

All the surgery had left me with many after effects and it took 3 ½ months of rehabilitation, with some taking many years, to recover from.

I was so fortunate to have survived all the brain trauma of those 8 days, but there was going to be a long hard road ahead.

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Mum and Dad will be eternally grateful to Fong Au Young who gave them, and later me when I was discharged, a bed and cared for us wonderfully for many weeks. Along with two other home owners who let us live in their homes whilst I recuperated.

Friday, March 4, 2011

FINDING MYSELF


In late 1998 I plucked up the courage to apply for Fashion Design School in Wellington. When this became known amongst my peers in Palmerston North there were a few discouraging comments implying that I didn’t have the talent to get in. These comments really made me doubt my own ability, so when I applied and was accepted to the course I had a real sense of pride.

I was so excited at having got into the course and really felt that I had found myself. I thought that I was finally going to be someone, and make something of my life.  Due to the brain trauma in 2000, I don’t remember a huge amount from 1999 but I do remember that I loved it when people asked what I did and when I replied that I was studying Fashion Design, that I didn’t get put down as I had with my Bachelor of Arts.  In reality though, I had never taken art at school and had to trace the figurines to draw my designs onto for my portfolio that I submitted. The truth was I was going into totally unknown territory.

Everyone in my course had taken art at high school and it was second nature to them, but many had never sewn. I was the opposite and while I was comfortable sewing, I found the huge number of pages of drawing required quite overwhelming. 

In saying that, I absolutely loved my course, and equally loved the feeling that I actually had some artistic talent within me. During 1999 I started painting for the first time but couldn’t really paint what I saw particularly well at all. I always painted the only way I had ever done, painting what I perceived.

I was absolutely obsessed with fabric and the different textiles that were available, and nothing would thrill me more than to go into a fabric shop and walk around feeling the different fabrics.

Another thing that was a real boost to my confidence during that year was that I got approached twice by people within the university to do plus-size modelling. I was the biggest size that I had ever been and was just so amazed and thrilled that somebody could see beauty in me. 

I was asked to start modelling for art students to draw, and also did a shoot with a photography student. I found the shoot with her very amusing as the theme for the shoot was ‘melancholy‘ and yet I had never been happier in my life. She wanted me to model wearing clothing that I had made which also delighted me.






  
During 1999 I was taken to hospital several times with the same symptoms as in 1998.  I would have an extremely severe headache and blurred vision, but be conscious enough to get someone to take me into hospital and could give my full medical history. Then the next morning I would have no idea why I was there, would have a MRI scan of my brain that showed nothing abnormal (apart from my tumour) and would have absolutely no memory of the night before.

The shunt in my brain draining the cerebral fluid from my ventricles was blocking, causing the symptoms, and then clearing within several hours

1999 year was the year that I felt like I had finally found myself and what I was meant to be doing with my life. In hindsight I am so very glad that I didn’t know just how drastically that was all going to change in 2000.