As part of her rehabilitation at IRS one of Diane’s goals was to write and publish her life story. With support of her OT Meaghan and funding from the TAC, she was able to enrol in an online creative writing course.
After seeing a creative writing competition for people with a disability, Meaghan worked with Diane on editing her story and submitted the entry. The great news is that Diane received a call from the competition organizers to tell her they love her story and want to enter it into the Melbourne Fringe Festival. They will also be conducting an interview that they will play at the festival!
I’m sitting here trying to figure out a way to describe the events of my life without it saying ‘look at me’ or trying to get you to feel sorry for me. I don’t want anyone feeling sorry for me as everything that has happened, has made me the person I am today, and I love who I am. So, I’m just going to stick to the facts.
My name is Diane and I was born in New Zealand in 1990, 3 months early, with Crouzon’s Syndrome. Sadly, my twin sister Jennifer was still born. Crouzon’s Syndrome is pretty rare and complex, but the short simple explanation is that my skull was fused when I was born leaving no room for my brain to grow (a baby’s skull is normally in 4 parts and fuses as the baby grows.) I had no cheek bones either and because I was born so early I was tiny (I can’t tell you the weight but I could fit in one hand) This meant a long stay in an incubator and surgeries before I could even sit up.
I had more surgeries than I can count before my final one when I was 17. When I was 8, I had ground breaking surgery which involved putting distractors in my head. These distractors stuck out of my head like antennas and my mum had to turn each one a quarter turn twice a day to form gaps in my skull. It was a very painful process and I am not sure how my parents coped with the ear splitting screaming coming from their youngest child. I was first in New Zealand and third in the world to have this particular surgery.
After this ordeal was over and I recovered from getting the distractors removed, Koru Care, an organisation that takes terminally ill children or children who spend a lot of time in hospital, on the trip of a life time. They took me to LA for two weeks and we went to every theme park you can think of as well as shopping at the biggest malls I had ever seen.
Considering this was a trip of a life time I can’t really remember all that much except the major parts of the trip, but I can tell you what I did learn from this trip, I don’t like roller coasters or any theme park ride that involves you ending up upside down or sideways.
The Mayor at the time of my home town Tauranga, Noel Pope threw me a party in his chambers. There were 100 guests and special appearances by big names at the time. Noel also declared the date April 28th, Diane Wilson day. Noel Pope was elected out the next year so this wasn’t put on the calendars but I still remember I have my own day and who can say that for real?
I was held back in school in year 5 as I had a lot of time off from school due to all this happening. I also had to change Primary schools because I was bullied so much due to the way I looked. The favourite taunt was ‘Alien’. I was teased so much about the way I looked, I began to refuse to look in mirrors and started to really think I may have been an ‘Alien’. I didn’t have many friends but the ones I did have I’m still close with today.
In high school, when you think people would grow up and stop with silly games, it progressed to more than just teasing. People had mobile phones so that’s when the cyber bullying and practical jokes started. People used to dare their friends to ask me out as a joke, or, if I was in a class where I had no friends, pretend to be nice to me and tell me things like “this person really likes you, you should ask them out.” If I did, they would laugh and throw stuff at me. I wasn’t allowed a phone until I was 15 and now I know why.
When I was finally allowed a phone, somehow people got hold of my number and used to send me horrible messages to the point where I had to delete messages to make sure I still had inbox space (this was the time before smart phones and huge memory.) I wrote the messages down on paper and took them to my dad, who instantly called the school.
My dad is ex-police and knew that because the messages were deleted, we had no proof. However, the school did resolve the problem eventually and the cyber attacks stopped but the face to face bullying had become so bad that I began cutting myself and considering suicide.
I recognised that I had a problem and asked for help which I did receive. I now know that many people don’t ask for help, so if you are feeling like you’re not worth anything, or that life isn’t worth living any more, please seek help because you are worth it and someone out there, whether it be your parents, siblings or even a close friend, loves you and their life will not be the same without you.
I was 17 and in year 12 year at high school when I had the final surgery on my mouth. Recovery was meant to take two weeks but took much longer. Once I was healed and the swelling had gone down, I suddenly looked like everyone else and people who had bullied me in the past wanted to be my friend. I was very confused by this because I was still the same person on the inside just looked different on the outside. People can be very superficial, don’t judge people by how they look on the outside, take the time to get to know someone and really see them for who they are, because you’re only ugly if you have an ugly heart.
Because my recovery took longer than expected, I wasn’t going to pass year 12 and would have had to do it again and no way was that going to happen. I was already older than everyone else after getting held back in year 5. In term 3 of year 12 I left school and became a full-time worker as a checkout operator at the local super market. While working there and having to work with numbers and money, it was discovered I was dyslexic (worst word for a dyslexic to try and spell!) I had so much time off school with all the disruptions; the dyslexia was never picked up.
A few months after leaving school and having no real direction, Dad read in the newspaper about a need for seasonal workers at a hotel in Frans Josef Glacier in the South Island. We went online and filled out an application form. A few weeks later I had a job interview and was offered a Room Attendant role and was asked if I could start a few weeks later.
Accommodation and three meals a day were supplied. I made the biggest move of my life and left my Dad and Stepmum’s home to make the flight to Christchurch, followed by a 7-hour bus ride to Frans Josef. The following 6 months were the worst, but also the best, of my life at the time. I hated living in a small town that had about 3 streets but when I look back now, I learnt the greatest lessons and made the best friends that I hope I will be able to meet up with again someday.
After 6 months I moved back to Tauranga. I got a job as a Room Attendant and moved into a share house. 6 months after that, I went on a holiday to Melbourne Australia to see my mother, sister Bianca and brother Michael and realised how much I missed them. On my return to Tauranga I booked a one-way ticket and made arrangements to move to Melbourne.
My friends gave me the best leaving party and as I sat in the restaurant, I realised how all these people had seen me through so much; the bullying, the pre and post surgery dramas etc. I loved all these people and
was so glad I had not gone through with the suicidal thoughts. I realised how much I did have rather than focusing on what I didn’t have. I have fantastic friends that would go to the end of the earth for me and the best family I could ask for.
Moving to Melbourne was harder and scarier than when I moved to the South Island but I’m so glad I did it. It just goes to show the scarier and the hardest moves you make in life are the most rewarding because it takes all your courage and strength to do them, so if something is hard and scary to do, do it. Even if it doesn’t work out, you still learn something about yourself and gain a new experience and you’ll never have to wonder ‘what if’.
I went to Melbourne with the luggage I was allowed on the plane, and had sent two boxes of stuff before leaving (I couldn’t leave my books!). I had no job to go to, no qualifications and only a limited bank account but what I did have was a family there that would support me until I got on my feet. I lived with my mother at first in the suburbs but that didn’t work out and I ended up living with Michael, in the city.
I absolutely loved it and living with my big brother brother was great. I ended up getting a job as a Room Attendant at a hotel in the city. I loved my new job, my manager and I became really good friends and after working there for 3 and half years I worked my way to 2IC (second in charge). A year later my manager became pregnant and I was training to take over the department. The weekend before I was meant to take over, I got into a serious car accident.
August 31st 2014 in the early hours of the morning I was T boned by a driver running a stop sign. The big SUV slammed straight into the driver’s door of my little red Mitsubishi and left me with a shattered pelvis, a broken neck, brain bleeds and a brain injury. I lost the sight in my right eye and hearing in my left ear. My right side was paralysed and I was put into an induced coma.
I thought once all my Crouzon’s surgeries were over, I wouldn’t have to set foot into a hospital again for a very long time, but 6 years later I woke up in hospital once again. Admittedly though it was a rehabilitation hospital. I found out later that it was predicted I would be in Alfred hospital at least a year before they even thought of sending me to rehabilitation but I only ended up staying at the Alfred about 6 weeks before being transferred to Caulfield Rehabilitation.
It took me quite a while to understand where I was and what had happened to me. I had a halo device on my head helping keep my head on my shoulders; I had a metal rod fused to my skull and neck with big bolts keeping them in place so the Halo was keeping that stable. I had an external fixation helping mend my pelvis. I was in Post Traumatic Amnesia (PTA) so I don’t have much memory of the first two months and what I do remember I can’t actually say if it was real.
While I was in PTA, I kept telling my family “they have moved me, I’m not in the same room any more” but of course I was. They had put some pictures on my wall to help me feel more comfortable, so I always had a reference point. Once the feeling started returning to my right side, I was so ready to get up and start walking. Doctors told me I may never walk, but I did not accept that, I was determined to walk out of rehab, I didn’t care how long it would take me.
I taught myself to be left handed as my right hand barely did anything. (I’m now trying very hard to un teach myself and become a righty again) and lying in a bed all day just did my head in. My brother brought me a prepaid phone as my iPhone was damaged in the crash, and now, instead of my family doing updates on my progress on Facebook so all my friends were kept in the loop, I was able to do it myself.
An old friend that I hadn’t seen in a while came to see me which was a wee bit of a surprise. He was in Melbourne visiting family as he lived up in Darwin. I can’t tell you a lot of what happened as I was still in PTA and can’t remember all of it; I just remember I was so glad to see Rob.
I also taught myself to sit up by pulling myself up using the rails on my bed. Once I mastered that and got the all clear from my doctors about being weight bearing, I started hassling my physio Lauren, to let me try and walk. Every morning when she came and put me in my wheelchair to head off to the gym for our session, I would ask “am I going to try a walk today?”
Finally, the day came when she replied that we would try. We just started with standing in the rails. I couldn’t believe that something we all take for granted would be so hard. I thought it would be second nature and it would just happen but no, it took every ounce of strength to pull myself up into standing. Having finally mastered that, Lauren told me to march on the spot. I wasn’t here to learn to march, so I took my first steps!!
My nephew in New Zealand was just learning to walk also, so I put myself in competition with him. I won of course! He seemed to be learning all the same things as I was at around the same time, and I used him as motivation. I’m a very competitive person, so it always helps to have someone to go up against, even if it was my wonderful 1 year old nephew!
Once I started walking with a walker, I was allowed to start walking around the ward. So everyday instead of lying in bed, I would get up and do a lap of the ward or go to the little courtyard they had that was outside and soak up some vitamin D. The sun and the breeze felt amazing. I have never appreciated fresh air so much in all my life! All those months in a hospital room not seeing outside, and having recirculated air through an air conditioner! I have really learnt not to take anything for granted and to enjoy and appreciate the little things.
When it was time to get my ‘halo’ removed I was so happy as it was just the most annoying thing. It was stopping me from having a good night’s sleep and whenever I hugged someone, I nearly took them out! The collar that replaced the halo seemed almost as annoying but now I could almost move my head.
My friends Holly and Xavier came to visit me and I was showing them how I could use my walker. I said ” I bet I can walk without a walker and just do it on my own” so with Xavier behind me and Holly in front to catch me in case I fell, I walked across my room (about 5-8 steps) on my own without rails and without anyone holding me.
I was as proud of myself as it had only been about 3 months since my accident and I was already achieving so much more than anyone expected me to do. I went to physio the next day so excited to show them what I could do, and from that day on we started to work on my walking without a walker.
I asked my doctor why I was still in hospital and she told me medically I didn’t need to be so I said “I want to go home then”. I told her I wanted to be home for Christmas which was the next week and she said Ok we would try for Christmas Eve, the following Wednesday.
Originally my discharge date would have been June but as my progress was so much higher than anticipated it was reduced to February and then Christmas Eve. I was so elated that 4 months after my accident I could walk out of that hospital!! The three flights of stairs to my independent living flat were a challenge but I did manage. With the help of District Nurses, I was able to use the hand rails the Transport Accident Commission (TAC) had installed in the shower and eventually the collar came off too. I still had to go into Rehab every few days for physiotherapy, psychology, social work and occupational therapy.
My psychologist Kelly, was my life line! I don’t know how I would have gotten through those first few weeks without her. Getting out of hospital after 4 months where I had everything done for me and always having someone to talk to if needed was a big shock. Having to prepare all my own meals, do all my own shopping (with my friend Bonnie’s help) and having to do all my own cleaning and having the place to myself and no one to talk to whilst my flatmates were at work was a challenge. I couldn’t understand why when I wanted to come home and had worked so hard for it, I missed the comfort of hospital. Talking with Kelly really helped.
As an outpatient at Caulfield I had a new physiotherapist, Kristy. This was a shock to me as with the brain injury I am not good with change, and Lauren had been with me for so long. However, I soon became close with Kristy and she helped me achieve all my goals and then some. I soon was able to catch public transport to the hospital rather than use a taxi. If I was able to catch public transport, I was able to go back to work.
I had been cleaning my house the way I would clean a hotel room for practice so I believed I could go back. There was a lot of red tape that we had to go through but my work place was so supportive and Michelle, the general manager and Leeanne, the house keeping manager did anything they could to support me. I started out doing two hours a day, three days a week. I thought at first this wasn’t enough but after my first day back this was more than enough!
After about a month I realised housekeeping was not going to work for me anymore and that I needed to find a new career path. This was a very difficult realisation but Michelle was very helpful and so she set up training in a desk position, reservations. I did five weeks training still two hours a day three, days a week. It was hard to learn everything I needed for this role in these short hours but I did manage to get the basics. I also learned reservations was not a job I wanted!!!
My decision to move to Darwin was made before I even knew it. After I got out of hospital I hung out with Rob when he was down from Darwin. A few months later I went to Darwin for the weekend and over the course of 6 months or so I went to Darwin or Rob came to Melbourne. At the 1-year anniversary for my accident, I wanted to celebrate how far I’d come and threw a party. Rob came down for it and we made our relationship official, so 30th August has a new meaning to me. I prefer to remember the anniversary of my relationship with him rather than my accident, focus on the good in my life not the bad.
Rob and I lived in Darwin for two years but it got a bit hard for me as there was very limited medical help there and every time I needed a doctor’s check-up or another surgery, I had to make the long 4-hour flight back to Melbourne. We both moved back to Melbourne where I had my last surgery.
We got married a year later and 4 days before our 1-year wedding anniversary we welcomed our beautiful daughter Loretta. Loretta had to be born via a Caesarean section as because of my pelvis injury in the accident I was not able to give birth naturally, so I was to have another surgery because of my accident but this one I was going to get my beautiful daughter, so I didn’t mind.
To this day I believe my twin sister Jennifer was my guardian angel the night I should have died. I was told later on I moved in the crash in a way that saved my life. Jennifer did that, she moved me. She was with me also all though my recovery giving me strength to carry on. I was meant to survive all the events that happened, I was meant to marry Rob and have Loretta.
It has now been six years since my accident., My family were, and continue to be such rocks for me; my dad, my step mum Kat, all my brothers and sisters and even though we don’t speak anymore, my Mother, during the time I was in rehab. I have the most fantastic people in my life and I couldn’t have done any of this without them all.
I have managed to stay positive for most of the time and my ‘can do’ attitude has been one of my biggest strengths that has given me the drive to achieve everything that I have set out in doing, focus on what I do have and not on what I don’t. I believe that if I had listened to the doctors who said I may never walk again; I wouldn’t be walking today. The brain is a very powerful tool, when you set your mind to something and believe in yourself, nothing can stand in your way.
My motto; ’Positivity and determination can get you everywhere’.