Tess' story

Tess has Treacher Collins Syndrome. For the first 18 months of her life she was fed through a tube. She was taken away from her parents 1 hour after her birth. She had her first operation at 2 months of age and spent the first 5 months of her life in hospital. Tess has had 12 operations in total and has decided that she does not want any more. Tess is now 23 years old and is happy with who she is. Tess has written her story for Jigsaw to share with others afflicted with Treacher Collins Syndrome.

So being the one born with Treacher Collins, I’ve only heard stories of the drama that my birth caused. I imagine that being the parents of a newborn baby, being told that something is wrong but that the doctors have no idea what, would be quite devastating and I’ll leave that part of my life for my parents to share what they will. I will say that it must have been equally bewildering for my older sister, who being all of about three years old would have had even less of an idea of what was going on, just that she had to go to the hospital nearly every day for close to six months. I have heard that she was the greatest little three year old there ever was and a great comfort to my parents and I’m sure she charmed many of the nurses and doctors. It’s what she does best.

I have very few memories of my kindergarten days. I went to the Taralye early learning centre (this is an early learning centre for deaf and hearing impaired children), which I’m sure I enjoyed as I got to play with blocks and dinosaurs, and make a mess, while really I was being tested and taught how to start communicating. I’ve seen video footage (I used to love watching it, I’m not so sure mum and dad liked it so much) I appeared to be having tremendous amounts of fun. When I was old enough I went to three year old kindergarten at Taralye as well. The classrooms had a mix of deaf kids and local non-deaf kids. I had friends and I formed a close bond with my teacher that remains to this day. She came to my 21st birthday party and as much as I enjoyed seeing her again, I think it was good for her to see me happy and that I plenty of friends and was living a normal life.

For four year old kinder I went to my local kindergarten. I have only good memories of being there, aside from the normal embarrassments of falling off the playground or not making it to the bathroom in time, that only happened once, I swear.
Primary school is when I first remember actually realising I was different. I think I made friends pretty early on, many of whom I still see. I was a fairly active kid… ok probably overactive, I loved to climb trees, play in the sand pit, play chasey, anything outdoors really. I played netball with the same group of girls for close to 10 years and I still play for the same club with a couple of the same girls. I wasn’t a very girly girl, I hated playing families and tea parties, I’m pretty sure I didn’t have any Barbies, although I did have one doll that I called Michelle one day and Michael the next, depending on my mood, I think that may have worried my parents.

The first clear bad experience I had at primary school that I remember was with a boy who I suppose was the bully of the school or the boy that kids in the younger year levels tended to steer clear of. He picked on kids because he could; I definitely wasn’t the only one. I can still remember the horrible dread that filled me when I noticed he had me in his sights. Two of my friends and I had just been hanging around on the playground and I think I accidently ran into him or something. As a baby I had had a trachea in my neck, to help me breathe. At this stage I still had a fairly obvious scar where it had been. As witty as a 10 year old boy can be, he pointed at it and said it looked gross and why did I have a belly button on my neck, (granted it did pretty much look like one). I believe he started calling me belly button girl, which I took great offense to. I’m sure I only heard him say it once or twice, but I can still feel the mortification of being put on the spot.

That was the first time someone had said something about the way I look right to my face, and actually now that I think about it, pretty much the only time anyone has said something so direct. And the thing is, he could have said much worse, he picked something very minor that was different about me. I can still remember my friends consoling me and telling me boys are stupid, which at the time of course they were! I think this is when my hero worship of my older sister really took hold. I can remember her telling him to go away which was a big thing for her as she was quite a shy, quiet kid. She gave me a big hug and let me cry and let me hang out with her for the rest of lunch and told me he was just being mean because he could be. Besides that incident, I honestly look back so fondly of my primary school years. I found out later, a few years after primary school, that I was considered one of the cool girls, but really I was just friends with everyone.

In year four we had two new kids come to our year and I became best friends with the two of them. The girl I knew before she came to my school, we did gymnastics together but we weren’t best friends until she came to my school. We became inseparable. Because of our gymnastics commitments, we saw each other every day except Sunday, and we often saw each other then too. On Mondays we would go to my Mum’s kindergarten after school and get ready for gymnastics, she would then take us to gym and her parents would pick us up a few hours later when we finished. Every second Wednesday we alternated who took and who picked up, on Fridays we always went to her house before gym, and on Saturday mornings we went separately but often got picked up together and we’d hang out at each other’s house until it was time for netball - we were on different teams. I guess it felt like we pretty much lived together! Now the other friend, who I still consider my best mate today, (and I’m always up for a cup of green tea and a chat) well, he seemed about 6 foot in primary school, I’m sure he wasn’t but I was tiny and he was huge and we must have looked very odd hanging out. Neither of us remembers how we became friends just that we did and all my best memories of primary school involve him.

Throughout primary school and a bit of high school, gymnastics was my life. I trained for over 16 hours a week. Gymnastics gave me something for myself that I could truly be proud of. I was judged for what I could do, not who I was or what I looked like. I was treated like every other girl in that gym. When people looked at me I think they sometimes/a lot of the time, assume that I’m more disabled than I am. I don’t consider myself disabled at all, but others do, and when I used to tell them I did gymnastics it always took people by surprise. Gymnastics isn’t exactly a sport that many people do in the first place, but it made people think twice about me. My friends used to love getting me to do flips and show off on the oval. Gymnastics was my thing and to my primary school friends that’s who I was. The gymnastics girl and the girl who could do flips - not the deaf girl. That’s not to say that if I hadn’t of done gymnastics I wouldn’t have as many good memories of my primary school days, I don’t think that’s true. I did gymnastics until about year 8 or 9 I think when it just got too much, with schoolwork. I wanted more of a social life. I wanted to go to the movies or shopping instead of training on a Friday night. So I quit. It was a pretty sudden decision and took everyone by surprise but I just wasn’t having the same amount of fun with it as I used, and I knew by then I wasn’t going to be representing Australia any time soon. I don’t think my Dad has forgiven me yet, for on a trip to America he bought me a fancy new leotard, and about two weeks after we got home I quit!

High school was high school, I went to an all girls’ school that was very academic and music oriented and I’m completely not. I’m a bright girl, or so my parents will have you believe, but I just have no interest in math or science. I enjoyed learning about history and social studies but I hated being tested on those things.

I was a sporty girl, and arty to a degree but sport was the one thing my school did not do well. We were the school that had spirit but that was about it! Being such a small school we often struggled to fill places on the swim and athletics team but we always had volunteers who knew they didn’t have a chance of even coming third, let alone winning. I participated in most sports that were on offer mainly to get days off when we had sport carnivals, but I do genuinely love sport. I was on the cross-country team, the athletics team, netball team, basketball, tennis, and I played most inter house competitions. I was never on the swim team, I don’t really enjoy swimming, but at first in year 7 it was more fear that stopped me from joining the team. I didn’t like being in such a large group or around people in general without my hearing aids on. I did swimming lessons in primary school for two weeks a year but that was with my classmates and friends and I got more self conscious as I got older.

In about year nine I think, I was convinced to join the school diving team. Now when I say team I mean me and maybe two others to begin with. One of the P.E. teachers convinced me to go in the inter school competition. I did interschool diving in primary school but that was just one day a year, I ended up having diving lessons for a few weeks before I quit. I think I did ok in that first competition in year 9, I didn’t win or anything, I wasn’t expecting to either but I did the school proud and that’s what counted the most. The next year we had a couple more people who wanted to give diving a go so the school hired a diving coach and we practiced once a week.

I would like to be able to say that diving got me more comfortable with standing around without my hearing aids, and while it taught me that I can do it and not die of the humiliation because I missed what was going on around me, I don’t think I’ll ever be comfortable not being able to hear. I still start to panic a little when my batteries start to run out and I can never remember if I put a spare pack in my bag. I still feel helpless when my hearing aids don’t work even though I can lip read to a certain degree and I can hear if you are standing close to me. I’d bet you money that my friends wouldn’t be able to tell you if they knew my hearing aid battery had run out in their company. I can get away with it in bars and pubs, because people have to yell to talk to each other anyway!

In year twelve I didn’t get house captain (which I’ll have you know I’m still bitter about), but I did get Sports captain although it didn’t really mean much at my school or involve doing things besides speeches in assemblies after a big inter school sports carnival. I guess it helped my public speaking but I still hate doing it and get all nervous and shaky. Being sports captain at my school was given a lot more credit from people outside of my school world than from inside. It was more of an honorary thing for my school, for which I was indeed honored that they felt I could and would represent the school when the need arose.

After high school, I didn’t want to go to Uni. Actually, I didn’t know what I wanted to do at all so I spent about six months doing nothing besides going out on the weekends with my friends and playing netball. My parents quickly got over this while I was still enjoying being fresh out of school and doing whatever I wanted, whenever I wanted. I started to seriously think about what I was going to do after my time off and eventually decided on trying a multimedia course, which I enjoyed. I am glad I gave it a go as it lead into my doing an intense Graphic design course where I made some awesome, weird and wonderful friends and learnt a lot and found something I could do quite well and enjoyed at the same time.

While I was studying I was working in my Dad’s office as the filing clerk. I really did love working there. I could do the work and there were enough different things for me to do that I never really got bored and I loved the people that I worked with. Everyone in the office got along and we often got together for Friday lunches and always had drinks on Friday nights. Most Fridays we all had a couple of drinks then went on to our separate Friday night activities, but every end of the month, we would gather in one of the board rooms and have drinks and food and often ended up going out afterwards together.

This job did a lot for my confidence. I was doing a job I could do, with people I liked. It was a great introduction to the real world. It also meant I spent more time with my dad who would often take me out for a quick lunch or a drink after work. I truly value my relationship with my Dad which has become more than just being father and daughter. I consider him a friend and someone who will listen to me and I can talk to… most of the time!

Since high school I’m also grateful for the relationship I have with my Mum, I enjoy our easy lunches and coffees and she listens to my ramblings when I’m sure I don’t make sense half the time, and I enjoy listening to her recap her golf days with the girls and watching cooking shows in the afternoon and our occasional shopping trips when we share dumplings and Japanese curry. I love that I now see my parents as individual people with awesome personalities and with lives of their own as opposed to just being Mum and Dad.

I have always loved my relationship with my sisters. I’m the middle child and I’ve always been able to relate to both of them. I do consider my older sister as pretty much my best friend. We’ve always been able to talk about anything and everything and I always enjoy a night out with her. We can be quite silly and odd when we are together. Our little sister just rolls her eyes at us and wonders how she can be so much more mature than the both of us. My little sister and I usually get on really well but we do have our moments. Now that we’re older and I’ve gotten to know her I enjoy her company immensely and I do enjoy going out for a dance with her every now and then. I love our chats on the way to and from netball twice a week. I’ve always loved that the three of us get along and enjoy each other’s company. We used to get comments on how great we all got along and could hang around with each other whenever we all went somewhere as a family. My sisters have always kept me grounded. They’ve never treated me like I was different, they never really considered I was different; it was just the way things were.

Throughout my school years I had a number of operations. In grade 2 I had an operation to lift my eyes. I had bone taken from my skull and placed where cheekbones should be. This is the first operation I can remember, I had quite a few others when I was a baby, from which I still have scars on my stomach from feeding tubes. I was never self-conscious of them when I was at gymnastics, I knew everyone really well before I was really old enough to pay attention to them. High school pool parties in year 11 and 12 was when I really was nervous about wearing a bikini as there were often people I wasn’t friends with or boys to impress. I didn’t want to be the uncool one wearing a full piece bathing suit so I sucked it up and just wore one.

I think I just tried to ignore it and not many people had the guts to ask what they were from. In a way, it was almost better if someone did ask and I could get it out of the way. It was the same if anyone asked about other operations. Boys especially loved the gory details and I think I gained a bit of respect for not shying away from answering questions even though I was always a bit worried about how people would react, but people that I call friends all just took it in their stride. And for people who didn’t and looked at me differently, well they weren’t really worth my time anyway.

Aside from the cheekbone operation, which was the biggest as I couldn’t open my eyes for awhile, I’m not exactly sure of how long I spent in hospital. It’s all a pretty big blur, but I think I was in hospital for a few weeks. I’ve had tear ducts put in, an operation to realign my jaw, and an operation on my nose to make it smaller and open up my airways to breathe easier.

I hate hospitals. I hate the smell, I hate the feel and I hate the sounds. I get nervous and fidgety just visiting people and I don’t breathe right until I leave. But while saying that, I’ve only ever had fantastic doctors and nurses and I’m happy that I’ve had the operations that I have. Tony Holmes, my surgeon, has always been fantastic and has worked wonders for me. I can’t in all honesty say I love the way I look, but then again, who does? Everyone seems to have issues and most days I’m happy and content with the way I look.

Here’s where I give a lot of credit to my parents. I’ve never felt like the odd one out in this family. I’ve never felt like a burden, although I do hate the worry that my many operations have caused them. It’s honestly easier to be the one having the operations than the ones looking on. My parents have given me every opportunity in this world and I can’t thank them enough. I know for a fact that I wouldn’t be who I am today without the unwavering support and love from my parents and sisters, which I return fully.

The biggest and best thing I’ve ever done on my own and for myself was a two month Contiki tour of America. I went by myself. Aside from making some pretty cool friends who I still keep in contact with, it forced me to fend for myself. I could easily have sat up the back of the bus and kept to myself but I wanted to have fun and to do that I had to talk to people. It gave me some much needed confidence in myself. Contiki made me realise that I just have to put myself out there and the kind of people I want to hang out with will want to hang out with me too and are willing to get to know me.

There isn’t a day that I don’t think about my ‘situation’, but although there are days when the stares and whispers get too much and all I want to do is hide away and have a cry, which honestly can be very therapeutic, I remember how good my life really is. I have an incredibly fantastic family and awesome friends who seem to think I’m pretty good company. That’s not to say that it doesn’t hurt and there are times I just want to be someone else. I wouldn’t be who I am without Treacher Collins, the scars and the operations. I can in all honesty say I quite like who I’ve turned out to be.