Sunday, September 12, 2010

THE ONSLAUGHT OF DEPRESSION - Experiencing Emotional Hell in a Seemingly Perfect and Carefree World

"Why are you so downcast, O  my soul. Why so disturbed within me? Put your hope in God, for I will yet praise Him, my saviour and my God."                                                       PSALM 43 v. 5

During the summer holidays at the end of 1997, my second year at University, things began to fall apart  prayer, but also had a lot of confusion and unacknowledged anger within me in regard to having a brain tumour and my body preventing me from being able to live the seemingly fun and easygoing lives of my friends. By the beginning of 1998 I was rapidly sinking into depression.

I was blind to see what was happening but after much concerned urging from my parents, who could clearly see that i wasn't coping, I went and saw a doctor. Through her persuasion I began seeing a counsellor and taking antidepressants. I made absolutely sure that neither my mother nor the counsellor knew just how often I entertained thoughts of suicide. It just seemed that would make everybody's lives, including my own, so much easier. I felt that if I ended my life my family wouldn't have to worry about my tumour growing, or any of the complications that had accompanied it.

Due to having been asked repeatedly how I was whenever I was in Waiuku, I had a three word pat answer that became my mantra over this time. "I'm fine thanks", that was always accompanied with a smile. It was what I desperately wanted to be , but much like the positive affirmations that I repeated while swimming (mentioned in my previous blog post), it was far from being my reality.

Within a few weeks of being on the antidepressants I began to feel a difference, a lightness that I hadn't felt in a long time. But after months of extensive counselling I realised that what I really wanted, in fact needed, was to be myself. I wanted to consistently be the same person no matter who I was with, instead of feeling that if I was the "real me" I wouldn't be acceptable to certain people. 

I was in contact with a woman in Auckland during this time who had overcome great odds and become an author and inspirational speaker. When I told her what was happening with me she asked me if I was journaling. Up until that time I had kept a diary of events and things that happened but no record as to how things made me feel. Pauline advised me to start writing everything down.

Over the next few months I wrote out everything I was feeling. A lot of it was in the form of a poem and I would have this set to music in my mind.

During this time I kept in close contact with one of my oldest friends in Palmerston North who was a musician. He put backing music to the songs I had written and this proved to be a lifesaver. Being able to go around to his place and sing out my fears and frustrations proved to be extremely cathartic, and his putting beautiful backing music to go with my songs gave me hope that maybe something beautiful could come out of these difficult, dark six months.

During this time I also frequented a jazz bar in town and always chatted with the others who were there. There was something very alluring to me about jazz music. There was so much freedom in it. It seemed that there were no rules as you could even make the music up as you went (scat singing) which was an enormous contrast to the rigidity of classical music. Through these contacts I ended up singing with a four piece group and thrived on it. Even though it was a totally new musical experience for me, and I had absolutely no idea what I was actually doing, once again it gave me hope.

After a month or two we recorded a demo CD and even though it was done very cheaply it proved to be very useful for getting singing work over the holidays in the years to come. One of the songs on it, Gershwin's "Summer Time", was by far my favourite as it represented how I was beginning to feel - light and free. 

One night early in the second semester of my study a very strange thing happened. I had an extremely severe headache come on that was accompanied with my vision crossing and bad pain out the sides of my eyes. I rang a friend and got him to take me to hospital. Then in the early hours of the morning I  woke up greatly distressed with no idea how I had ended up in there. I called up another friend who came up to the hospital and stayed there with me. The doctors booked me in for a CT scan the next morning but by then there was nothing to see. I had had a bad chesty cough for weeks and was told that what had happened was all due to my having pneumonia and pleurisy. I was, once again, sent home and told that I would need a few months bed rest.

During this time I did a lot of thinking and soul searching and I realised that the reason that I had had such problems with my self-
image was due to the fact that I could never buy clothes that were long enough for me during my teenage years (I was 184cm tall at 14 years old). I had interpreted the reason for this as being my fault, that I was clearly too fat and unacceptable.

As a teenager I wasn't able to see that this was actually a problem with the industry and not a problem with me.

I had been sewing since I was a child (my mother was a sewing teacher) and during the year prior to my getting sick with supposed pneumonia I had sewn a lot for friends and myself. I soon felt that by making clothes at flexible lengths I could actually, in a practical way, help women to not have the same frustrations and self esteeem issues that I had struggled with. This, to me, was a practical means of achieving the same goal and I began to seriously consider studying fashion design.

I want to dedicate this blog to Clay McGregor who, during this difficult period in my life was prepared to set time aside and work with me to make beautiful music out of my writing. I don't think you ever realised it, but your friendship, support and encouragement saw me through Clay. Thank You.

Sunday, May 30, 2010

My Early University Years Living With a Brain Tumour and Bad Health

In 1996, 18 months after being diagnosed with an inoperable brain tumour, I moved to Palmerston North to study a Bachelor of Arts in Psychology and Education, with the goal of doing school counselling. Almost ironically, as I still had a very negative view of myself, I wanted to be able to help adolescent women conquer their self esteem issues.

I moved into a flat on the property of a Baptist Youth Hostel and absolutely loved it. I had never known Christians who were my own age before and thrived on not having to feel that I was somehow weird and ‘un-cool’ because of my faith.

Coincidentally there were two girls who lived in the flat opposite mine who played the violin. One of them had been in the New Zealand’s Secondary School Orchestra with me and I was just so thrilled to have people who were also into classical music living so close by. Within the first few weeks, however, we got together to play a trio. Doing this caused me so much pain that I ended up in bed for a couple of days afterwards. I found that devastating and couldn’t work out for the life of me why it had happened.

One of the favourite pastimes at the hostel was to play touch rugby. I tried to join in but this too landed me in bed for a few days, everywhere I had been touched hurt like crazy. Once again, I had no idea what was causing this. I ended up mentioning both of these instances to my GP. She sent me for testing and I was found to have fibromyalgia – a muscle pain condition.

I enjoyed my study, though found it quite frustrating how seemingly everyone at the hostel saw doing a BA as a ‘bugger all’. This general belief certainly didn’t help with my already extremely low self esteem.

In spite of living amongst people who shared my faith the low self- esteem and insecurities that I had through my high school years still plagued me. Unlike my friends at the hostel, I avoided the camera as much as possible and if I was in a photo, never smiled. For me, it felt somewhat dishonest to smile as it would be showing people that I liked myself which was far from the truth.

I kept up my fitness levels during my first 3 years at University with swimming 2 - 3km a day. I learnt, through my study of psychology, the power of positive affirmations and so wrote some up and repeated them to the timing of each stroke desperately hoping that one day they would become my reality. I remember one of them was “I look great and feel great and accept myself as I am”. Nothing could have been further from the truth.

During 1996 I really came to loathe anything to do with sickness and being unwell. For me those two things were highly correlated with feeling depressed and feeling that that I was boring and extremely uncool, or ‘lame’ as the word was for such things was at the time.

When, in July, my mother was diagnosed with a large kidney tumour and I had to fly home to see her in hospital. I was a mess but couldn’t cry. I desperately wanted to be able to cry but could not physically shed a tear. I still, to this day, don’t know the reason why I couldn’t shed a tear until 14 years after I was diagnosed. I don’t know if it was due to something that the tumour affected, or due to facing a lot of trauma over that time and my brain not being able to cope with it all.

Mum had her kidney removed and was told that it was a very dangerous type of cancer and could have spread into other areas of her body before it was diagnosed. I really struggled over the years with feelings of despair at the possibility of losing Mum to the cancer.

The seriousness of the situation with Mum was very hard to deal with, living by the hostel where everyone else always seemed so happy and not having major problems. In spite of being surrounded by people, I felt very alone in trying to deal with my circumstances. I tossed between wanting to just talk to someone about it and not wanting to discuss it with anyone, and opted for the latter.

At the end of my last semester in ’96, after having a period of severe abdominal pain, I was sent by my GP to have an ultrasound scan and was found to have a gallstone. I had surgery over the summer holidays and it seemed such a simple operation. Done laparoscopically it meant that it would only leave me with three 3cm scars and I would only need to be in hospital a couple of nights.

They gave me the stone to take home in a jar (oh thrill!) and it hasn’t been until the last decade or so, knowing other people who’ve had them out, and seeing the great number of large stones, that I have realised that it was in fact tiny. I now really wonder whether there was really any need for it to be removed.

For the six months or more after the surgery I experienced chronic problems with heartburn and nausea. My nickname, within my flat, became “Mylanta lips” because I would always come out in the morning with white lips due to having to drink Mylanta (a white liquid antacid) during the night.

I ended up having to move home for the first semester of 1997 due to the problems with these post-op complications. I absolutely hated being away from all my friends and felt very morose during that time. I also loathed being back in Waiuku where it seemed everybody knew about my brain tumour.

By the time the 2nd semester came around I felt more than ready to go back down to Palmerston North. I had really struggled living back in Waiuku but didn’t think anyone would understand if I tried to explain it.

In the first month or so back with my friends I once again began to get abdominal pain and could feel a bit of a lump on my abdomen. A scan revealed that the shunt, that had been put in when I was first diagnosed, (to drain the fluid from the brain to my abdomen) had bent at more than 45 degrees and there was a large sac of fluid. I was told that I would need to have surgery to correct this, and I knew that this meant having to go home again.

Greatly distressed about it, I met together with a group of my friends from the hostel and we prayed for healing. It seemed impossible to me as, even though I knew that God healed, this was a bent plastic tube, not an organ. I did strongly feel though, after we had prayed together that I wanted to a current song “Thank you Jesus”.

During the flight up to Auckland I felt a strange sense of peace, strange because I was supposed to be facing surgery and the thought of that initially really troubled me. I went and saw a specialist in Auckland and had a scan. The radiographer contacted the radiology clinic in Palmerston North to confirm that I did have the right scan report from there as the scan I had just had showed no sign of a bend in the shunt and the sac of fluid was gone.

This absolutely stunned and thrilled me. Instead of having to stay in Auckland for surgery I caught the first flight back to Palmerston North and resumed my study. I remember several of us who had prayed together before I left feeling the same sense of astonishment, we had all heard that God healed but to experience our prayers being answered in such a profound and unusual way was beyond our comprehension.

Sunday, February 14, 2010

Life Before I Was Diagnosed With a Brain Tumour and The Year That Followed

In the years before the diagnosis of my brain tumour I had three main passions – Music, Study and my Christian faith.

I had felt called from an early age to work in Africa amongst the poor and share with them the love, joy and acceptance that I had found in God. By the time I was diagnosed I had narrowed that down to that I was going to do physiotherapy with the goal of working in Nigeria.

I was an absolute perfectionist musically and academically and beat myself up hugely over any slipups in either area.

I’d been playing the violin since I was 11 and singing since I was a young child, with professional training from the time I was 14. By 1994 I had been in the New Zealand Secondary School’s Orchestra for two years.

I loved the violin and the way that I could express myself on it, but felt real frustration at the constraints of having to play accurately to the semihemidemisemiquaver. I also sang classically but it was not my main ‘instrument’, so to speak. Even though I loved being able to produce beautiful music with both of my instruments, I would never feel happy about any of my performances and would only pick all the faults I saw in them.

During my high school years I never listened to mainstream music and basically just saturated myself in classical. It was my love and my passion and, by the time I was diagnosed, very much part of my identity. 4 days before my diagnosis a photo had been taken for the local paper about my having been accepted into the national orchestra again, and this was published on the day I was diagnosed.

In the previous 8 months I had been working hard at school so that I would get the marks to qualify for Physiotherapy school. This really worked to my advantage as I had to get estimate marks for the last term of my 6th form year, due to my having to have neurosurgery, and the teachers were generous with what they estimated and I easily got the marks I needed for physiotherapy.

About a week after my surgery, when sitting in a cafĂ© across the road from the hospital with Mum and a close friend, I was told what was to me the most devastating news I had received so far – that due to their having put a shunt in my brain and the risks of it blocking, I would not be permitted to ever go into a third world country.

I remember sitting there just stunned and feeling as though my world was falling apart. Suddenly all that I had been working towards and dreamt of doing since I was a child could no longer happen. I remember thinking that if I couldn’t work as a missionary in Africa, I couldn’t really serve God at all. That was the first time that I really started to question what purpose there could be in what was happening. And the first time that I felt that somehow what had happened was out of the hands of God. Why would he NOT want me to be a missionary? I remember feeling totally disillusioned.

During my two weeks in hospital many of my close friends and their parents came to visit me and there are two things that I still clearly recall. Firstly, I couldn’t work out why everyone was so upset! To me, I knew I was going to be alright. I had heard in the early hours of my D-day (diagnosis day) that I had a brain tumour and that had been accurate and so I knew the rest would be too.

The other thing I recall feeling was a huge amount of happiness due to the acceptance from many people that I had felt hadn’t really cared less about me beforehand. This initially was something that I liked, but developed into something I really hated.

I came to a point, many years after diagnosis, where I felt that if people didn’t want to have to do with me before knowing I had cancer, then it was only pity or guilt that was motivating them to want to have to do with me now and they were two things I disliked with a passion.

After I was discharged from hospital, I have no idea why, but I felt a real pressure. I felt worried that everyone (at my school, and in my hometown, Waiuku) would expect me to have changed through this experience and I didn’t feel I had at all. I recall feeling very anxious about attending school again later that year, worried that people would expect me to somehow be a better person than I had been before diagnosis. I now can’t conceive how I could have thought such a thing, but know that it was a very real feeling at the time.

Prior to my diagnosis there had been a huge build up of fluid that caused extreme pressure in the brain. This caused my pituitary gland to be so squashed that they couldn’t see it clearly with a CT scan. It was only after an MRI scan that they could fully see the damage. The surgeons also said that I have a very thin skull due to the extreme pressure in the brain for a long period of time. I was also told that I could never bungy jump, go skydiving, or scuba dive due to the pressure these things put on the brain.

When I was diagnosed the doctors were all amazed that I had no symptoms other than the severe headaches as the build up was so extreme.

After my surgery I was referred on to both endocrinology and gynaecology departments. My hormone levels were all over the place, due to the suppressed pituitary gland and hypothalamus for so many years. I had grown tall (184cm) when I was 13 but had not had any other development that would be expected in a female teenager.

Early in 1995 they started me on hormone therapy to try and bring on menstruation and that was when I began to go through puberty as I hadn’t experienced it prior to my diagnosis. Feelings of rebellion, anger, resentment of my parents rose to the surface.

Mid-1995, after extensive research into the other options available to treat my type of tumour, Mum and Dad decided that we were going to go over to the Hoxsey Clinic in Mexico. I remember thinking that there was absolutely no need, but hey, if I was going to get a holiday to America out of it, I’d go along with it!

While my mother and I were in Tijuana, Mexico, my father was asked by a local paper to give them a photo of me to go with a comment mentioning that I had received money from a trust to help us go there. Dad gave them a passport sized photo, assuming that this was the size that would be used. A few days after our arrival home I came home to see an enlarged photo of myself on the front of the paper with the comment “Gabrielle Bryce has received funding from a trust to help towards alternative cancer treatment in Mexico.”

I was devastated that the photo had been blown up and put on the front page of the paper, but didn’t realize just how much it would affect my life from then on. No longer did I have anonymity about my condition and suddenly I became known in our small town for all the wrong reasons.

Now when I walked along the street, or shopped in the supermarket, people would cock their heads and look at me pityingly. It was what I came to call the “oh you poor thing” look. I would have strangers stop me in the supermarket for many years to come and ask “Oh Gabrielle, How are you?”, while I would be thinking “WHO are you?”

Around two weeks after this photo being published I decided to dye my (long dark brown) hair blonde. I had never dyed my hair before and initially had a disaster with it, choosing to use ‘Sun-in’ to do it and it turning a bright orange! So I snuck off to my hairdresser, during school hours and got it dyed blonde professionally. Mum and Dad knew nothing of it and it wasn’t until I walked past Mum’s classroom later in the day that they found out!

It wasn’t until many years later that I was able to see that my dyeing my hair was actually my way of disguising myself. Also, in the photo that had been in the paper I had my hair pulled back so I wore it down from the day it was published.

Lots of people in my hometown now knowing about my tumour played a significant role in which university I chose to go to. Instead of going to Auckland or Waikato, where I knew a lot of people from my year at school were going, I chose to go to Massey University in Palmerston North, where I knew only four girls from my year were going to be. I didn’t want anyone knowing about my tumour, except on my terms. I knew that none of those girls would be in the Baptist Youth Hostel and flats that I applied to live in and so I felt somewhat ‘safe’ from the Waiuku gossip about it all.

In 1995 I saw my school’s Career’s Advisor and Guidance Counselor to try and see what I could now do with my life. I considered Occupational Therapy, furthering my music on the violin, and Social Work, but ended up deciding that I wanted to become a school counselor to try and help young women deal with the self esteem issues I had been plagued with in my teenage years. I ended up applying for and studying a Bachelor of Arts majoring in Psychology and Education.

From 1995 and through my years at Pamlerston North, even though I didn’t realize that was happening at the time, I went through the first 4 of the 5 stages of grief, in coming to terms with cancer and having a terminal illness (as set out by Elizabeth Kubler-Ross in her book on Death and Dying in 1969).

After my diagnosis, and throughout 1995 I was in total denial that I had cancer. I refused to join ‘Canteen’ (a support group established for teenagers with cancer) and wouldn’t let people talk about that I had cancer, or a terminal illness.

I remember making and selling muffins for the school staff and having a stall set up at school for one day selling them. I was however, horrified when a fellow prefect tried to get some kids to buy some saying “if you don’t buy them she’ll die”. I know he thought it was quite funny and don’t think he could have had any understanding just how terrible a thing that was for me to hear.

We were blessed to have received some funding towards the cost of our flights plus the treatment from a local trust fund – the ‘Barbara Hull trust’. I remember Mum talking to me about the fact that this actually wasn’t a holiday and we were going to have very little money for spending. I thought ‘whatever’ and prayed that somehow I would be able to get some spending money.

Less than a week later a man came up to me and gave me an envelope and told me that it was a gift towards my spending money. When I opened it up later I found it was a cheque for $1000. It was the first time that I had ever experienced such a clear answer to prayer.

Going to the Hoxey Clinic was surprising in that it seemed no different than going to any hospital. They dealt with cancer all day every day and so I guess that was why it was no big deal. When we left they let us know that they would need us to return every 3 months, but we knew that there was no way we could afford to do that.

While I lived at home I stuck religiously to the strict Hoxey diet but found it impossible to stick to in my first year at University. I had chosen to live in a flat beside a hostel so that I could cook my own meals but really struggled to do it and ended up just abandoning it and eating junk like the rest of my peers. I felt bad for not sticking to it, especially after all the money that had been spent, and didn’t let my parents know that I had left the regime completely until much later.

A verse from the bible that we were given at the time of my diagnosis by a family friend really kept me going through 1995, and indeed many years after diagnosis. This verse was Psalm 139 v. 16 from the Bible and says “All the days ordained for me were written in your book before one of them came to be” This really spoke to me during the time immediately after diagnosis and reassured me that God not only knew about what was happening, but he actually knew about it before I was even born and it was therefore part of the plan of my life and in His hands.

The Journey So Far.......(in summary!)

On October 3, 1994 (when I was 17), I was diagnosed with an inoperable brain tumour. We were told at the time that there was, medically, no treatment available. A shunt was put in to relieve the pressure in brain that the tumour was causing, due to it blocking a ventricle.

In ’95 my mother and I traveled from new Zealand to Tijuana, Mexico to an alternative cancer clinic. And then from ’96 – 2000 I studied and lived and coped independently. In April 1996 my mother was found to have high grade kidney cancer and had the kidney removed – it has not recurred.

In may 2000 I had to have 6 lots of neurosurgery in a week that left me struggling to walk or see clearly, with no short-term memory, unclear vision and with a permanent chronic muscle pain condition. In August 2000 I had to move home to live with my parents for what I thought would be a few months, as I had no memory of how serious the surgery had been, or how close to death I came. I have now been here for 9 ½ years.

In the years since 2000 I have had to have radiotherapy (2002), and further neurosurgery (2004 and 2006) – both lots of surgery taking me right back to basics again with having to learn to walk, read and write again each time. After my surgery in ’04 I was put on to a high dose of steroids and put on 40kg in the 14months that I was on them.

Since 2006, relying on God to be my strength, I have lost 53kg and overcome a lifetime of size insecurities.

At the beginning of 2008 the pain condition moved to my hands to the point where I struggled to feed myself or hold a pen. Then at the beginning of 2009 the pain progressed to my legs, where I could not walk without severe pain.

In August 2003 my father was diagnosed with an acoustic neuroma (a non-cancerous brain tumor). He opted to not have surgery and ended up traveling to Hawaii to have a type of treatment that wasn’t available in New Zealand – gamma knife radiotherapy.

These last 16 years have been a journey that is so very different for how I had my life mapped out to be in 1994. The one thing that has remained a constant, however, is my faith. On the morning of my diagnosis two significant things happened that have kept me going during difficult times. Firstly I woke in the early hours of the morning after having had a dream. The dream was that I was up in front of people talking about having survived cancer, and then secondly I woke @ 5.30am and a clear but quiet voice in my head told me that I had a brain tumour but was going to be alright.

Even though, at times, I have forgotten about these messages and had to be reminded, they have kept my family going during very difficult times post-surgery where it looked as though I wasn’t going to make it, and has been something that I have gone back to many times.

In spite of this being not, by any means, how I would have planned my life, I would not change anything. Through being taken right back to basics I have come to know and depend on God’s strength to do everything. And have also come to have an extremely intimate relationship with Him.

These experiences have influenced my outlook on life tremendously and even though I haven’t had the breathtaking moments that many of my peers have had through international travel and the likes, I am now grateful that this is the path God chose for me.