NB Live Suzie Simons Full Speech

NB Live Suzie Simons Full Speech

Male:

“Going to start off with a personal story from Suzie Simons who works in the RNIB's resource centre, among many other things. She's a columnist for NB, so I'm sure many of you will have read her articles in that. So where we are, here's Suzie, give her a round of applause.”

Suzie Simons:

“Some of you already know an awful lot about me, so I apologise if I repeat myself - and I'm quite loud, sorry.

I've been registered blind for over eight years. When I first started helping out at Action for Blind People's resource centre at Judd Street in London, it was impossible not to be reminded of how my sight loss began, because you're always reminded.

So I'd already accepted my journey of living with sight loss but there are always going to be other people's stories that have similarities and you're always going to be reminded of when your own situation began.

I was at the best time of my life, I was 27, I was married, I had a young baby and I was a nanny for years and I had exactly what I wanted. I remember waking up that morning and I'll never forget it, to the gorgeous gurgling sounds of my beautiful baby and rolling over to see the time and I couldn't see my alarm clock. It's probably quite a familiar story.

It was horrific. A grey fog was in front of my eyes and my husband had already gone to work. So in a panic, I rushed into my baby's bedroom and, to my horror, it looked like I was looking through the frosted glass of the bathroom window. So all colours were dramatically muted as well.

I used to - not wishing to trivialise it, but I used to say, everything's in varying shades of grey, but then a certain book came out which kind of - yeah, you know what I mean.

I managed to get my baby, Danny, ready using a ridiculous amount of wipes and overestimating everything from how much nappy cream spirited out all over the place to making baby porridge. It all seemed really impossible.

So my initial diagnosis of myself was that I had an eye infection. So I found my mobile but I couldn't use it. So I then tried the landline and failed many times but eventually managed to get through to the doctor's surgery and they gave me an emergency appointment.

I then contemplated using the car but I had second thoughts; walking won. It turned out I didn't have an eye infection. My doctor skills aren't up to scratch, clearly, but I had a urine infection. So my immune system has really bad sense of direction and it attacked my optic nerves instead and it left me with no central vision at all.

So - I've got to catch up with myself now. It took a very long time to find out what it - what was happening and every time they gave me an eye test - and there have been literally hundreds - I lost a little bit more hope of getting my vision back.

Daily tasks became a battle. I couldn't work out how to get toothpaste on my brush, butter my toast, and make tea. Everything had to be done differently. There was no more reading, no more people watching, no more driving. I also tripped and fell, walked into bollards, didn't realise there were stairs. I felt totally disempowered and my independence was totally ripped away.

I was so frustrated, because everything takes so much longer now, even when you've adapted. I was totally occupied with my beautiful baby and he thrived under my blurred care. But when I put him down for his name, time played tricks on me. I would sit half way between the oven and giant wall clock and just marvel at the disappearance of time. I wasted hours.

Because I had a little baby, or maybe because that's the way my local authority do things, they sent round a team of social workers. I was so focused on struggling, feelings of inadequacy and how hard I was trying and I was really sure that they wanted to take away my baby. It really wasn't the most rational time of my life, but when you're terrified that's what you do.

So when they asked me how I was finding things, I would make all the right noises and say, I'm fine, I'm coming to terms with it. I felt sure if I showed how difficult I was finding the transition, I would be deemed an unfit mother. If I didn't put on a brave face, I might wake up the next day with something else missing.

So I plodded on and I got pregnant with my second baby, Hannah, who was born about a year after I was registered blind. A great decision actually. Everything was a little bit easier by then, but I was given an awful lot of support.

After I lost my sight, one of the most difficult things I had to learn to deal with was other people's reactions to my sight loss. People who I didn't know wanted to know lots of personal things about me from, was I born blind? And then swiftly moving forward onto how this terrible thing happened to me.

What I could see? Sometimes waving hands in front of my face. I was doubted on being blind and refused help. Sometimes, I lost control of my emotions and I once screamed at somebody, who would pretend to be blind? You wouldn't wish it on your worst enemy. I don't think the poor guy has got over it and that's probably about seven years ago.

I became someone who was afraid to talk to people, which is very out of character. I was afraid the all-too-familiar barrage of questions would start. Sometimes I couldn't have that conversation again. That was just strangers. Then there was the people who loved me and that I love.

How are your eyes? I still get greeted with at most family reunions. When I say it's the same, they're almost ecstatic and congratulatory, where I don't really know what to say to that, really. My lovely mummy didn't want me to go anywhere on my own and constantly offered me lifts and was incredibly insistent on my taking her up on her offer.

I was told that I had a very good chance of my vision coming back and naturally I wanted to believe them. So I waited and I waited, and I was in denial for a year or possibly more, but my vision never returned.

I didn't really start properly dealing with it until my little one started nursery when she was two. I decided that I really could do with some counselling. It's not something you - it can't be something you're rushed into, it has to be in your own time, otherwise you can't be open to what it offers.

When I first got given my symbol cane, my ex-husband said, but you're never going to use it, are you? So I did. Not that I'm contrary or anything. But I realised that if my rubbish vision was going to be permanent, it would really help me, to be able to show my disability more easily.

Not looking blind is something I'm often congratulated on, thanks. But that doesn't help me get the assistance that I really need. I found it so beneficial, not having to explain my vision everywhere I went, and I could really get the help that I wanted. It was very empowering.

When I finally stopped waiting to be cured, I got on with my life. I'm not trying to trivialise things, but my new cane was especially useful at all you can eat buffets, which had been one of my favourite places before I lost my vision and then became hated, because I could see there was something there but no matter how close I got, I couldn't see what it was, even if I climbed in.

I'd generally bang my head on that little piece of plastic that they have protecting it and the other customers didn't really like it when I climbed inside.

I was recently sent on a course giving emotional support in groups and they described sight loss as a bereavement, a grieving process. That basically sums it up very well from my experience. Denial, devastation, desperation, hopelessness and I was also struck by a ridiculous sense of guilt. I didn't want even my family to know how devastated I was.

I didn't have a rehab worker, but I have met a lot in the last three years and I think it's an amazing service. I often wondered at the beginning when I met one if it might have made me be bloody minded - be less bloody minded, sorry. Yeah, but probably not, really.

But it might have made it easier for me to ask for help.

I did get given an occupational therapist by one of my social workers from my local authority and she helped me take a massive step forward. She taught me to tough type and how to use the computer, she was patient and kind and showed me that there were possibilities. This opened up a lot of doors for me and made me feel some hope again.

I love being a mummy, I really do, but I was very nervous of what would happen to me when my youngest started school. I knew that no one would hire a registered blind nanny. Can't find my own children, let alone somebody else's.

So when my little one started school, so did I. I started training to be a counsellor. I found mine so amazingly beneficial that I really wanted to be able to help other people in the same situation.

After my first year of training, I started work at the resource centre at Judd Street. It was the end of a very, very difficult year and that was three years ago. I had - I needed to take some time out but I had full intention of going back later. But I'm still unsure, because I still seem to be there and I'm very satisfied with the roles that I play for RNIB and Action for Blind People.

I love being front line and meeting and greeting at the resource centre. Putting people at ease and helping them to find what they need. I've been so empowered by this experience and thrive under the other staff's support and friendship. I never imagined what it would mean to me to be there and to be part of their team.

It's helped me to grow massively as a person and fully accept my disability. I'm not trying to teach my grandmother to suck eggs and I promise I won't stay on my high horse for too long, but; I just wanted to share that you really can make a difference.

Even if the person sitting in front of you isn't ready to get help. I do know how frustrating it is to feel - how frustrating it feels to be able to see what the person sitting in front of you needs but don't take it out on them, how frustrated they might be making you feel.

Remember they are dealing with a massive loss and everyone handles it differently, but being kind and empathetic goes a very long way, even if they're not ready to accept your help. And I know that you're over worked, under staffed and dealing with your own life stuff. But I've been told time and time again, that people are too scared to ask for help and a lot of them are unable to take in the enormity of what is happening to them.

I now work on Action for Blind People's Living with Sight Loss course. I'm a massive advocate of them and it really helps people come to terms a little bit more with what's happened to them. I even wrote my last column about it. Everybody living with sight loss should have it at their disposal, but I now realise that people can feel very swamped by too much information at diagnosis and it's difficult to know when the right time to tell people about it is.

But, the next time you're sitting with someone and you're telling them that there isn't anything else you can do for their sight, please give them a lifeline, tell them about the ECLO, who I know spoke earlier. Somewhere that they can go for support.

There's an ECLO at a lot of hospitals now. Or tell them about the sensory team at their local council and please tell them about RNIB and Action because of some people it really is a lifeline.

Just like any other bereavement, time can change the responses that we have to it. I have been forever altered by my loss. I have accepted, moved on and dealt with but, at times, I'm still surprised by the enormity of it all.

But I have really got on with my life and it's good. Some of the time. I have great family and friends and my beautiful boisterous children who everybody asks, do they help you? And no, they're children, of course they bloody don't.

They're seven and nine now and they're delicious. Some of the time.

I really have what I need in my life and I love writing for NB Magazine. I just hope that I haven't bored you so much that they take away all my privilege.

Thank you very much for having me.”

Voiceover:

To find out more about NB Live, visit rnib.org.uk/nbmagazine.

RNIB, supporting people with sight loss.