17-year-old Beth Holman shares her experiences of growing up with a visual impairment having been treated for bilateral Rb as a baby.
Originally published July 2019 on the CHECT website.
I don’t remember my retinoblastoma treatment. I remember the check-ups – long days, the anaesthetic and the McDonald’s I always begged for on our long drive home – but not the treatment.
But I know that my family can remember it.
This encourages me to constantly make my loved ones proud no matter how difficult things may get.
When I was around twelve weeks old, I was taken to my GP because my mum noticed a white glow in my eyes. Doctors were baffled and next followed a frustrating and lengthy process of being sent to the local hospital, until I was finally diagnosed with bilateral retinoblastoma – cancerous tumours in both eyes.
I had several rounds of cryotherapy, radiotherapy and chemotherapy before having my right eye enucleated just before my second birthday. I am now 17 and though I’m now in remission, the remaining tumours in my left eye limit my sight to only peripheral vision.
Despite all that, I have a strong passion for photography and wish to pursue it as a career. I proved everyone wrong with my GCSEs by getting amazing grades overall – particularly in photography – and I am determined to do the same with everything else in life.
I constantly have people asking me how I manage with photography or if I’m actually any good, and this can be disheartening as people doubting you can make you question your own ability – I know that I can do it, and having faith in myself is the most important thing.
I also have a very prominent love for makeup. This is something which has taken me a long time to adjust to. I have had to teach myself techniques to match both sides of my face and not let my blind spots stop me. I have also learnt to create the illusion of more symmetrical eyes than I actually have, which is something I used to do every single day.
I don’t feel it necessary to wear makeup anymore though, as I choose to embrace my artificial eye most of the time. I do it now because I enjoy the process, being able to demonstrate my skills, and to show that I can do things that people don’t expect from me.
Some of the key things I’ve learnt is to have good lighting when doing anything detailed like makeup, to have perseverance but to also adapt. I’ve got several different mirrors in my room, which serve a unique purpose: a hand held one for needing to be close to my eyes and some different mirrors which are angled to reflect into each other, allowing me to see the right side of my face which I can’t do with just one stationary mirror.
I am aware that I can stand out because of my prosthetic and I was sometimes bullied in school because of it. I look at people at an odd angle because I can’t use the right side of my vision and I also have a nystagmus, an involuntary movement of the eye, so it appears that I am looking all over the place all the time. As you can imagine, to someone who doesn’t know me, this could be very off-putting and strange. I sometimes get asked ‘what I’m looking at’ or if ‘I’m staring at someone’ and this can be an awkward situation to address as I feel obliged to explain my condition.
As I’ve gotten older this has become easier to deal with, I have learnt different coping strategies from CHECT and have adapted to explain what I feel comfortable with rather than feeling pressured into answering questions.
I have always attended mainstream school and am currently doing my A levels after receiving good GCSE results last year. I put in lots of effort and being a survivor of Rb did not limit my academic potential.
Meeting people through CHECT events and Teen Focus Council has been incredibly helpful and rewarding – until I started attending these events, I hadn’t previously met many others who have had Rb.
I now have some amazing, supportive and inspiring friends who I have met through the charity and have learnt from. I love being involved with the Teen Focus Council because I want to give back and make the phenomenal support that I’ve had from CHECT even better for others in the future.