When I was seven, I broke my arm. What I didn’t realise back then is this became the catalyst of a year of pain, hospital appointments and a final diagnosis of arthritis. I was in and out of a wheelchair for the next ten years, and battled two sides of disability – lack of mobility and chronic pain – losing what felt like my childhood and independence.
After all the hospital appointments and eventual diagnosis, doctors told my family I would need to have yearly checkups. It turns out one of the things that they need to keep an eye on (pardon the pun) is that arthritis can spread to your internal organs – your liver, your heart, even your eyes.
Some years later, at 14, I started to get some flare-ups and inflammation in my eyes, which persisted on and off for two years – what would later be officially diagnosed as uveitis iritis.
The inflammation was so fast and aggressive that I needed steroid drops and injections in my eyes just to be able to cope with the pain. By the time I reached my GCSEs, my sight had deteriorated to the point I was unable to drive so I was registered as blind, however, this is classed as having ‘usable vision’.
Unfortunately, my school had never had a visually impaired pupil before, and neither had the sixth form I was planning to attend. So with the encouragement of my family and support from my local council, I joined a specialist college for the blind, where I learned everything from cane skills to touch-typing and braille.
“Injections, cataract surgery, laser eye surgery, silicone oil implants to keep my retinas attached... pretty much anything they can do to your eyes, I’d had it”
I was still one of the more sighted pupils at my school. But I thought it important to learn these skills encase I lost any further vision.
From the age of 14, I’ve had several operations in both eyes: injections, cataract surgery, laser eye surgery, silicone oil implants to keep my retinas attached... pretty much anything they can do to your eyes, I’d had it. Each time they did something new, though, it’d work for a while before my sight would deteriorate again.
By the time I was 23, I had long lost my sight in my right eye. I then contracted a viral infection that made me lose my sight in my remaining working eye, for a week. Despite continuous treatment for seven months, it wasn’t looking good, and I was told me there was one last ditch option. Due to all the scarring on my left eye, my doctor – Prof Andrew Dick – said it had become almost impossible to keep operating and so I could have one final operation that could make my sight better, could keep it the same, or could mean I’d lose the remaining sight entirely.
I made the decision to have the operation.
It turned out there was so much damage, bleeding, and further retinal detachment, there was nothing they could do but to save the eye itself, but not my vision. I went in with maybe 5% vision. I came out with nothing.
Some hours later, due to the blood draining from my eye, I had light perception: I could tell the difference between night and day, I could tell if the lights in a room were on or off. You know when you close your eyes, you can see there’s light coming in, but nothing around you? That’s what I can see and that’s where I am today.
According to the RNIB, 93% of blind people have usable vision and just 7% have absolute zero vision. For me, that means if you’re handing me something, you have to say that you’re handing me something. If you’re pointing something out to me? You have to tell me whether it’s on my left or my right.
That’s what blindness does to you physically, but I also struggled with my mental health while losing my sight. I am quite a stubborn person, I don’t really let things affect me, but even I told my parents that if I ever lost my sight: I would take my own life, because I couldn’t live in a world I couldn’t see.
I had been on the RNIB’s waiting list for emotional support for around 18 weeks but, ironically, the day after I lost my sight was the first counselling session I ever had. I truly believe they helped me get my life back on track. I stopped being myself, and I let my sight loss consume me because I felt like my life was over. And basically the counselling just helped me take each day at a time, helping me to focus not on what I couldn’t do, but what I could achieve.
While at my specialist college, I had ‘counselling’ there, but none of us ever felt like we got the right emotional support that we deserved – frankly we all left basket cases and tried to get on as best we could.
With my new counsellor though, I had someone who was not only a trained counsellor, but who was sight impaired too. As a fellow blind person, she understood what it really meant to be in a world that wasn’t made for you.
Receiving counselling through the RNIB, social support from local groups like the brilliant Sight Concern Bedfordshire and later talking about it openly on my blog made me realise that, yes, anyone could suffer from poor mental health at some point in their life, and that it doesn’t discriminate – but when you’re living with a disability, you are even more likely to suffer from mental health issues. Whether it’s to do with lack of support, social isolation, or just feeling lonely, or that no one around you understands what you’re going through; you can really struggle with depression and anxiety – sometimes without even realising that’s what it is.
Two years on from losing my sight I still battled with poor mental health, my moods were up and down to the extent I ended up going to my GP and seeking support. I was diagnosed with clinical depression. While I was on the waiting list for counselling I decided to go on antidepressants.
“Whether it’s a lack of support, social isolation, or just feeling lonely or that no one around you understands what you’re going through, you can really struggle with depression and anxiety”
Changing medication and upping the dose several times became ineffective for me and things were becoming so negative I knew I had to make a drastic change. In early 2019 I received treatment of transcranial magnetic stimulation through Smart TMS, which has really helped balance me out and quite literally given me my life back.
As someone who went from being a sighted person, to a visually impaired person – in a sighted world – to going into the blind community, I’ve realised actually being blind doesn’t mean that you’re not capable and it doesn’t mean you’re not intelligent. Everyone thinks blind people are incapable. And that shows in the statistics, because 80% of blind people of working age are not in any sort of work – because a) employers believe that we cannot work and b) they will have to put their hands in their own pocket to support us financially. But blindness doesn’t mean your life is over; you just need adaptations, patience and a change in attitude.
Having said all this, I honestly feel blessed to be blind in today’s day and age. I lost my sight in 2013, but half the technology I use daily didn’t exist then. These days Apple is possibly every disabled person’s favourite company – they build accessibility into each piece of software and make you feel like your disability isn’t a burden.
As a disabled person, I didn’t have a voice, however, having technology that allows us to use social media and create our own blogs, now we have a platform to share our voice, from our perspective. These platforms have helped blind people connect to each other and opened doors for us that were never open before.
It was only when I lost my sight that I saw the beauty of humanity. I’ve had to ask for help from strangers in the street. The media perpetuates that we all hate each other, and we all want to kill each other. And really, that’s the farthest from the truth.
I try and go into schools and talk to young people because the epidemic of online bullying is quite severe. And I say straight up: I got to the point where I thought I wanted to take my own life, but I realised that having the right support: confiding in people I know and trust is the reason I didn’t, and as long as you reach out to someone, someone is always there.
Through my speaking engagements and volunteering work with Guide Dogs, my goal is to try to get everyone I meet laughing because it’s so important to know that yes, sight loss is tricky, frustrating and sad, but life isn’t over. And as long as I can educate people on that, and campaign for funding for more mental health support services and better vision loss services, our communities and hopefully our government will see why there is such a demand and necessity for it.
I am just one person who has experienced sight loss, this is just my story, but I want my story to be recognised as proof you can live a happy and fulfilled life with sight loss or a disability.
As told to Charlie Lindlar
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