Having six lots of neurosurgery in eight days in 2000 left me with many noticeable after effects. Initially the problems were that my visual fields were crossing which was leaving my vision very blurred. I had lost my sense of balance and so wasn’t able to walk without help, I had no short term memory, and I was also left with ongoing headaches and severe continual back pain.
A smaller after effect of the surgery was that I lost a lot of my vocabulary. I would say a sentence that would make sense to the listener, but I would have to ask what certain words in it meant and whether it made sense. I slept with a dictionary by my bed for many of the years that followed. I would think things and then have no idea what the words in those thoughts meant.
My parents stayed down in Wellington for three months after my surgery to help me convalesce. I had been put into a rehabilitation unit but the state of it was less than ideal and Mum and Dad decided that they would stay down in Wellington and would take me to the rehabilitation unit each day rather than my having to stay there overnight.
On the 7th of June my parents headed back home to Waiuku and I went back flatting. I had absolutely no memory of the surgery, and especially not of just how touch and go things had been for a while there, so to me it was no big deal and I wanted to put it behind me and get on with my life.
I moved back into my flat and, against all of my doctor’s wishes, enrolled for one paper at design school that would start in July. I thought that if I just went about doing what I had done before all the surgery, my life would just click back to what it had been before it.
I was regularly having onslaughts of extreme pain that was like nothing I had experienced before and was having to go into hospital and get pethadene injections. My emotions were swinging with the high doses of pethadene and I struggled to cope.
As predicted, I wasn’t up to the stress of the one paper I was doing at design school but I couldn’t understand why. In my mind nothing much had happened with the surgery and I felt very confused and frustrated that I couldn’t cope.
In the second week of August, after long discussions with Mum and Dad and with their strongly encouraging me to move home, I made the decision that I would go home until the end of the year. It was very clear in my mind that I was this was only going to be for a few months and that I would get back into my course in 2001.
On the weekend of the 12th of August I had a birthday/ farewell party and got ready to move home, doing so on the 16 th. Because, to me, this was only for the short term I wasn’t too worried about it.
In the months that followed moving home I struggled greatly to cope with the continual pain that I was in, and also to cope with how I was feeling emotionally.
I was sinking very low but, having come off antidepressants in 1999, I was in absolute denial that I was depressed. I was adamant that nobody was going to know how low I was feeling, I did my very best to try and hide it – even from myself. Unfortunately in my attempts to cover up the lows, I over-compensated and was swinging quite high.
I continued struggling to cope with the pain as the months went on and after several consultations with different doctors I was enrolled in a month long, full time pain management program with The Auckland Regional Pain Service that would start mid-November.
The first and main thing about this program was accepting that you were going to have this pain for the rest of your life which was something that, at that point and time, neither I nor my family were prepared to accept.
The focus of the program was learning how to manage living with continual pain. A woman at the gym I went to in Wellington had said I shouldn’t work out if I had acute pain, and I didn’t know the difference between acute and chronic pain, and so I had stopped exercising. Working out each day was one of the main facets of the pain management program.
During the year after I moved home I really struggled to understand what was happening within my body. I felt great confusion as I had felt so led going to fashion design school in Wellington and now couldn’t sit down and sew for more than a few minutes without excruciating pain. I really grappled with what had happened to my life. I just didn’t think that all the surgery in 2000 was that big a deal and part of my struggle was coming to understand and accept that it was actually a huge deal and that my life had permanently changed and would never be the same again.