US-born Eve Smyth is a 62-year-old second-generation Rb survivor living in Scotland. She shares her advice, as well as her fascinating story of growing up blind and how she managed to find the strength to adopt after tragically losing her son to trilateral retinoblastoma.
My mother was born in 1922. At first her family were told that a cat scratched her eye, but as her eye deteriorated very quickly, doctors realised that something more serious was the cause. It wasn’t long before she lost her first eye.
Back then, a radium plaque was a method used to treat the tumours, however this wasn’t enough to save her remaining eye meaning that she became totally blind.
My mum was amazing, she went on to achieve a doctorate in psychology at a time when not only was it rare for women to achieve such a high qualification, but education and everyday life was far less accessible for those with a visual impairment.
Unlike the convenience and accessibility that comes with today’s electronic braillers, screen readers and other digital technology, my mother would have to lug around a large open reel tape deck around university. This was a time even before cassette tapes-they were huge things with two big reels on top-you would feed the tape ribbon in one end, through the reels and then flip the thing over when it was done. I think she may have also had some braille too.
My mother would always try to hide the fact that she was blind – I’m not sure how that’s even possible! She would never ever ask for help, I never understood this.
When she decided to have children, doctors didn’t realise that Rb can be hereditary. As a baby my father looked into my eye and said he could see something “growing in there”. We were living in California at the time, so I was seen at the Eye Institute of South California where doctors found I had very little vision because of the tumours in my eyes. My bilateral diagnosis and advancement of tumours meant they weren’t willing to take any chances and I also had both of my eyes removed just as my mother had before me.
My parents were also told by doctors that I could be brain damaged – again the knowledge back then was limited compared to today. My mother was told to never have any more children – so instead she adopted, and I grew up with three adopted siblings.
My baby sister was adopted when I was seven months old – so it was always amusing when people tried to do the maths! My two brothers were adopted later.
Childhood
Growing up blind, my dad, who was fully sighted, didn’t want me to carry a cane. However, my stepmother thought I should have one, and she won. I mean, I would look a lot more blind and draw more attention to myself if I were to fall off the train platform!
My mother taught me braille. She would also have friends read aloud children’s books and she would copy them. I read everything in braille I could get my hands on-no matter what it was. Not just stories – complicated information, even intelligence tests-anything! I wanted to read everything. In fact, I once was given an intelligence test – and had to own up and say to the examiner that I’d already read this one!
Because my mother never tried to get assistance, I feel she was prevented from doing a lot of the things in life that I have done. My advice is to get assistance if you are struggling – don’t ever stop doing stuff just because your senses are playing up!
Sadly, my mother died of ovarian cancer when she was 46.
Adulthood and having children
In the 70s I was part of a travelling singing group working with the Churches of Christ. We flew from the US to Scotland which is where I met my husband.
We were in a room having a cup of tea with people the group had only just met. I was a bit shy back then, but I used to tell a lot of jokes. To break the ice, I asked if anyone would like to hear a joke about an Irish man, but before I could start, an Irishman in the corner of the room shouted ‘No’! At the time I didn’t know he was there – we’ve been married 39 years since!
After getting married and settling in Scotland, we started to talk about having children. We had genetic counselling and it was estimated that there was around a 50:50 chance that our child would have Rb.
In 1982 Matthew was born. He was examined immediately but doctors couldn’t find any sign of any tumours, but then after a follow-up they found some in both eyes. At first the tumours were frozen, then treated with radiotherapy. However, they discovered that he also had a brain tumour – they didn’t have a name for it back then, but it’s now known as trilateral Rb.
Sadly, Matthew passed away when he was four years old, he would have been 37 this year.
Later on, I was told not to have any more children, so I thought ‘forget that’! We decided to adopt. Having grown up with adopted siblings, I was no stranger to adoption. It was tricky to adopt at first, my GP and health visitor were against it because I was blind – even though my husband was fully sighted.
However, my social worker flagged it up as being unfair – she was amazing and helped us push to get approval. We asked for a child with a sight problem because that’s what we already knew, but we were told there were none at first.
Then In 1990 we adopted Chris, who had Coloboma – a gap behind the pupil which doesn’t close up. Chris was partially sighted, with one eye worse than the other. At age 11 the retina in his good eye detached which they had to fix. Now aged 30 he had to have his eye removed last year due to glaucoma and replaced with an artificial one – although it’s not such a big deal to him because he grew up with a mother who had two artificial eyes!
He now has a little five-year-old boy called Jordan who, unfortunately, has inherited the condition. Hopefully he won’t have any complications with his eyes.
As well as having Rb, I also have severe asthma, which has also had a large impact on my life. Coupled with being blind – I would always have to send someone into a restaurant first to see how far away the non-smoking area was, if the path was clear and if I was likely to make it across the room in time before becoming breathless! Of course, these were the days before the much-welcomed smoking ban.
As a result, in my adult life I’ve done a lot of work for Asthma UK and the Asthma UK Centre for Applied Research, everything from being a public speaker to reviewing grant applications and sitting on committees.
I also had breast cancer in both breasts, and I’ve been clear for two years now. After the breast cancer I decided to also work with Cancer Research and the Royal College of Physicians.
I’m also on a couple of patient steering groups-I find medical research fascinating. With the experiences I’ve had – I can lend a patient’s perspective as well as one of a disabled person. I do somehow find myself speaking for disabled people sometimes. It’s most likely that people have several conditions at once – I’ve realised that now. Using my life experience, it’s good to help influence various organisations for the better.
Advice for others
The key thing is if there’s something you want to do-go for it. Rb isn’t something to be afraid of – I grew up thinking it was. The survival rates now are amazing and research and treatment have come along in leaps and bounds.
Life as a blind person isn’t that bad. Weird stuff occasionally happens, but then weird stuff happens in life anyways and that’s all part of the game. My advice to parents of children with a visual impairment is to encourage them to be independent but not be afraid to ask for help if they ever need it.
Technology and awareness are so much better now than they used to be as well, which is helpful, but it can only get you so far. I was taking the train once with my fully sighted friend. We realised that we were in the wrong carriage when the train split off and headed in the wrong direction. My friend was the one who was panicking – whereas if you’re a blind person, in a world that’s not geared for you, you learn to keep your head. You pretty much always have a backup plan.
I simply called National Rail who explained everything we needed to know and how to get back onto the correct train. Nowadays I have an app on my smartphone that I use to check trains. You just think ‘I can do this. I’m in a situation now where I simply have to work things out. It’s brilliant being able to do stuff myself on my phone though.
It’s easy to understand why some parents want to assist with everything, however it’s also important to encourage children to take a few risks every now and again. Coming from the opposite angle was my Dad – if I couldn’t do things the exact way he did – he thought I shouldn’t do it. I remember struggling with giant scissors-my response was to use a shorter pair of scissors. Make adjustments to make things work.
The main thing is that life is too short-you have to run with it and sometimes it’s stressful, things occasionally go wrong – let them get on the wrong train once in a while.