We, at the Childhood Eye Cancer Trust know that Maria is over the 12-18 year old age bracket but we asked her to write about her life during that period so that you could read about her experiences. Maria's story is also good to read if you are a parent of a young child with Rb as we asked her to include tips about starting a new school and about other things such as using make-up, boys and driving.
My Story by Maria Tattersall
My name is Maria, I am 23 and I was diagnosed with retinoblastoma (Rb) in my right eye when I was nine months old, it took doctors a while to realise that it was Rb due to a lack of knowledge in the field especially in the rural area that I live in. I was treated by having my right eye removed and replaced with an artificial eye. Being so young at the time means I have no memory of that point in time - I do remember going for check ups at hospital when I was 4 and 5 years old and going for new artificial eyes fitted as I grew.
As a young child I didn't really have much of an opinion about my eye apart from when it didn't fit too well (either too small and it would feel loose or too big and it would feel uncomfortable.) When this happened I didn't want to have my artificial eye in, but when it fitted correctly it didn't bother me at all. (This is why regular check-ups are important!)
As I got older I became more aware that I was different to other children. At school peers were often very interested in my eye asking many, many questions - I didn't mind at all as I knew that once I had answered them that was it for a year, as it was a small school so once a few people knew everyone knew until the new starters arrived each September. It may seem strange but the most popular question was 'Can I touch it?' (I think this is children's favourite question regardless of topic!)
Teasing at Primary School
I was only ever teased by two boys at school, one who was so curious he asked question after question every day and I had to sit next to him... I solved this one by taking my eye out in front of him to shut him up (this is not a sight you see everyday and can be very shocking to those not living with a child with an artificial eye like mine), this tactic was very effective.. the boy in question never asked me a question again! (I do not recommend this as a regular option!) The other boy actually called me names and made me upset at times but because I had good friends around me I was able to stand up to him. Even then I realised the teasing about my eye was not actually anything to do with my eye, this boy teased everyone regardless.
To help your child at primary school it is important that you teach all your children that teasing is always wrong but especially when targeted on this topic. Help your child make and keep friends by allowing them to bring friends home or go to friends houses and work with the school to resolve any problems as soon as they arise. Encourage your child to talk about their eyes with others, children are very curious and will ask questions anyway so help your child see this as a positive rather than a negative. Above all just be there for them and do all you can to make them feel empowered and confident about themselves. Although primary school can be hard to negotiate as a child and parent remember that having Rb can be a positive... I made many friends thanks to my unique talking point, some of whom I am still friends with today.
I won't lie, going into year 7 was a scary prospect for me, regardless of my Rb so adding in the fact that I looked different in a very judgemental world scared me more. I was no longer protected by my small village school and same friend for 6 years, I was in BIG school now. I was worried about how to explain my artificial eye to everyone (in my primary school everyone had known everything so I had not had to think about this much), again people were very interested! In my first week I became a minor celeb after all my primary school peers had told their new classes about me, everyone wanted to see if it was true that there was a "girl with one eye". This description is one that upset me because to me I have eyes, it's just that they are different. (On this note I encourage you to use the same language, you have eyes and there is no such thing as a good eye and bad eye, they are your left and right eyes.) The interest soon died down and I learned to handle the questions more, I chose how I discussed the topic carefully; I never said I had Rb, I would say I had cancer as people understand that and I would often choose to say I am blind in one eye and that's why it doesn't move and I would not fully explain that it was artificial until I was confident that the person would respond positively.
Again my artificial eye had a positive side, at times other older students and those who came from my primary would become very protective of me. If anything negative was ever said people understood that at least 7-8 others around me would give them twice as much back.
To help yourself cope with secondary school;
- ask if you can be placed in a form group with friends from your primary before you move up to that school
- find what you are comfortable saying about your eyes and Rb to others around you.
- realise that it's ok to tell people to leave you alone and that it's ok if you don't want to talk about things in detail.
- if you are finding it hard or have problems, find a teacher you trust to talk to and of course talk to your family
- friends are very important at this stage so try to get out there and join in with things. Remember..... even when you don't feel confident, if you act like you are you soon trick even yourself! This is a tip I used a lot!
Being a Teenager
The only part of teenage life that Rb affected is make up, seems like a small thing but as a teenager this was very important. The problem was that because my artificial eye does not move the muscles around it are not as firm as those around my other eye. This means make up can look different on each side, so the challenge is making both sides look the same. I could tell you how I managed this but it totally depends on your own face so my advice would be useless. What I will say though is to experiment, try out different ways of applying make up such as eyeliner and eye shadow until you feel happy. What also helped in this area was that I am short sighted in my non artificial eye so need glasses - wearing glasses kind of hid my eyes so that differences were not as obvious at times.
As a teenager with more and more events etc.. I began to see photographs as my enemy as they often caught me at a moment where due to my right eye being fixed it could look like I was looking two different directions. I hated these photos, so I taught myself how to pose in a way to prevent this. My tips for this are; turn your whole face towards the camera and face the camera at the same level to avoid looking up or down at the camera, but best of all practice what works best for you.
Driving and cycling
My parents were not sure if I was going to be allowed to drive at first but after contacting the DVLA near my 17th birthday and explaining the situation they issued me with a confirmation letter that I was allowed to drive so the lessons began!! I think part of this is that because of having lost my sight so early my left eye has learned to compensate so my field of sight is much broader than it would have been otherwise. It does not quite make up for my loss of sight though, which means I have to be more dependant on mirrors both when driving and biking. When riding a bike it is difficult to see cars at certain angles so it's best to have a small mirror fitted to the handlebar.
Just like any teenage girl, boys were up there on the list of topics with friends. I was always shy as a teenager anyway and lacked confidence around boys so at times having Rb added an extra element of shyness. Sometimes I would wrongly assume that boys were looking at me just because of my eyes being different - this was more due to my own insecurities than reality. As I got older and thought things through more my confidence grew and now even I forget about my eyes being different and so do my closest friends.
I was a slow starter with boys and didn't start dating until I was 18. I chose not to discuss my right eye until I was totally comfortable to do so with the boy in question and even then I would choose not to explain that it was artificial and simply say I was blind in one eye due to cancer. The exception to this is my current boyfriend of four years, Chris. We were friends for a while before we started dating - right from the start I felt comfortable enough with him to discuss everything openly and from the start of our relationship I felt that it would be a long term relationship so felt it best to discuss all elements of having Rb from the start. This means that when we discussed the future and the possibility of children I had to bring up the possibility of our children having Rb. This was hard to bring up as I was worried that it could cause rejection of either having kids with me or of me as a partner. Luckily he was totally ok with the topic as his reasoning was that I had it and was totally fine and happy, our children would be monitored and treatment has advanced a great deal since the late 80's when mine was treated, and above all it is not a definite that any of our children would have Rb especially as I am the only one in my considerably large family with Rb, so it is more likely to be sporadic than genetic, but the advice I have received is to contact a specialist when we are planning to start a family to discuss the subject fully.
Overall I would say that having Rb and having an artificial eye affected me much more as a child than it does now or will do in the future. The way it affects your life depends on how you let it affect you. The best advice I can offer to parents is that there will be some hard times but if you equip your child with the confidence to deal with situations then these hard times will be short lived.