Sight impaired. Who, me?
Sight loss is an emotional business; I struggle with it - wrestle with it, mostly. For a long time I was on the ropes…. But now, I’m winning every round.
I’m not the person I “used to be”. In fact, I almost don’t recognise myself at times. My sight loss has forced me into becoming someone I didn’t choose to be, and, for a very long time - approximately 15 years give or take (scary I know!) - I didn’t want anything to do with the ‘new’ me. Complete and utter denial, bloody mindedness, sorrow, anger, grief, fear and stress (don’t forget the stress) became my emotional default setting. I had put myself well and truly in the ‘why me’ zone. As if I didn’t have enough to cope with, I felt lost. Sight loss can make you feel incredibly insular and not just from losing one of my most major senses but from the complete lack of support. Not from friends and family, but from a massive lack of sight loss organisations. No sign posts - no one to help me with emotional, practical, financial or technological support - lost.
I’m not gonna lie, losing my sight has been a complete nightmare! At times things were so relentless and painful and stressful for such long periods of time without any let up that I felt defeated by it. DING! DING! She’s down and knocked out…..the hardest thing I’ve ever had to confront and cope with – ever.
Complete sight loss, closely followed by my sanity, complete loss of EVERYTHING. I had nine sight-saving surgeries in 12 months, clinic appointments and check-ups, a year of rehab (in very loose terms), some sight returning. Then being diagnosed with depression, unemployable, round peg - square hole syndrome, diagnosed with Glaucoma. Two weeks before the birth of my first child, my sighted eye haemorrhages leaving me with no central vision, further sight loss, my baby arrives, but I can’t see her. The NHS shows me the door and my career as a nurse is over. My glaucoma becomes unstable, I have more sight-saving surgery, more sight loss, clinic appointments/check-ups. Depression sets in again, I.develop visual hallucinations, my ‘disco’ lights, I like to call them. My baby needs me – I need to be a mum. More scares, more tests, more tears, yes, but I need to be a mum.
You get the picture.
This may well sound a bit tragic but, guess what, I’m not alone - there are thousands of people out there going through their very own sight loss journey and if you’re reading this, chances are you might be too. I am on a journey – but now, I’M in the driving seat (air punch!).
Living with sight loss is multi-faceted – just coming to terms with it is more than enough. It’s a grieving process, we go through bereavement, and we grieve for the loss of our sight and everything else that gets lost along the way. But trust me on this – there is a way forward, there is a life after sight loss.
What does life after sight loss look like? Well, it means being in control of sight loss instead of sight loss being in control of you. It’s about accepting who you are and not fighting it – being different is ok, it’s what sets you apart from the crowd and that’s very ok too. It’s about learning how to adapt - achieving the same goal but in a different way. It’s about putting your stubbornness aside and giving yourself permission to ask for help and get things wrong! It’s about surrounding yourself with likeminded people, people who understand. It’s about dealing with the past, living in the moment and planning for the future.
I recently realised that I had been so busy being a mum that I hadn’t given myself the time I needed to deal with the grief of losing my sight, I convinced myself that I had, but I hadn’t. A key factor to unlocking my new found happiness and fulfilment and confidence was putting myself through the very painful yet incredibly exhilarating experience of the wonderful world of therapy. This has been LIFE CHANGING and without counselling I wouldn’t have had the courage to have put myself through college and discover the second LIFE CHANGING chapter in my life – an IT course for the visually impaired at East Sussex College. My confidence and happiness is at an all time high (I’ve dealt with my mental health) and finally accepted who I am. My new found and long awaited confidence enabled me to face the fear of accomplishing new experiences and am now about to complete my first year at college.
I have been given this huge window of hope and opportunity to learn about technology and help me to access the world again! Technology is moving at a rapid pace and if you don’t choose to opt in to it, you very quickly get left behind. And so with sight loss and very little understanding about all things IT, ‘my world’ felt incredibly small with little or no access to its limitless possibilities. Currently, I am learning how to use a computer with a combination of keys (in place of the mouse) on the key board and I wear a headset to listen to the screen reader tell me audibly what’s on the screen.
The offer of a place on the course came about through a conversation with an RNIB employment adviser. In all my 20 years of sight loss I had never heard of such a thing existing. I’m usually grouped together with the 70+ demographic of people with sight loss generally not interested in a career but who have an abundance of tea and cake mornings, crochet or sound tennis, none of which my age group of thirty-something’s with small kids would be chomping at the bit to get involved with. In my experience, there has always been an abundance of support/activities for the elderly but very little, if any (in Brighton and across Sussex anyway) for the 30-60 year olds with plenty to offer the workplace. And for years, because of this experience I had resigned myself to the idea that there wasn’t a chance in hell of me entertaining the idea of a career, the working world was off limits to me. Anyway, what could me, an ex-Nurse with significant sight loss and low self esteem possibly have to offer an employer? I used to tell myself this. Nowadays you’ll hear me say ‘This is what I can offer and this is what I’ll need in the work place in order for me to achieve it’.
So, my very first thought upon the offer of a place on the ITQ course for the visually impaired was ‘What… me? But I’m sight impaired and, anyway, how will I manage the walk from the train station to my class room!?’. This reason alone is why some students decline the whole idea. Yes, I got THE FEAR. Practically talked myself out of it, but then, I gave myself a stiff talking to. I spoke to the course leader and arranged a drop in day to suss things out for myself.
It became very clear, very quickly, that I was in safe hands. Keith Eldridge (course leader/tutor) and Dave Perrott (tutor) understood sight loss and everything that came with it. They go above and beyond their role and offer orientation on the walk between the station to the class room door and continue with this until, like me, I have built a mental map of the route and with my cane eventually felt confident enough to walk the route independently. Who knew, right?!
I now belong to a new tribe of people, people like me who understand - and I feel liberated. No two people travel the same sight loss path, there is a vast array of reasons why people suffer sight loss – we have sight loss yet all see differently. Some have some useful vision and some don’t have any and all this is accounted for on the course. One of the many special attributes to this course is that Keith and Dave tailor the content to the individual needs of the student on a one-to-one basis. An example of this is that a light sensitive student will need the classroom environment to be in complete darkness meaning that Keith and Dave must also learn to teach in that same darkness……imagine that for a moment.
This course is unique to the South East – there isn’t anything akin to this in this area, which makes it worth shouting about. Students have to travel far and wide from Kent, Surrey and Sussex to attend, and they dig deep in the courage and resilience department to do so. Dan Gumbrell is about to finish Level 3 of this course (six years in the making) and he is the very proud owner of a brand new job as a result - how about that!
So you see, further learning IS available AND accessible to people like me. To know there is a future out there for me is a huge deal – I will work again, just you watch me.