Hi, I’m Sam. I’m 27 years old and I live in North Wales. On the 28th August 2020 I was declared legally blind. Before we get to where I am now, we need to go back to February 2004.
I was told I had Leukaemia, and had to undergo a bone marrow transplant (luckily my Mum was a match), as well as chemotherapy. After recovering from Leukaemia. On New Years Eve 2006 I collapsed in the bathroom at home and after being taken to hospital, the Doctors told my parents I had Meningitis. This, combined with the lasting effects of the Leukaemia treatment, irreparably damaged my lungs, taking the lung capacity down to 11%. This meant that, on 13th July 2007, I had to have a double lung transplant.
These treatments also damaged my eyes. I noticed first at around 16 my sight wasn’t great but I didn’t really think that much about it, partly because I had other health issues to resolve. It was in my early 20’s when I really noticed it was deteriorating. The treatments had caused my eyelashes to grow back inward, which scarred the surface of the corneas, leaving me with limited vision. I got by, although at times it was difficult to see small print, and I found bright light and glare blinding. At this point, I already had no vision in my left eye.
I was told by Professor Kay at Liverpool St. Pauls Hospital that I needed a cornea transplant on my right eye. I had that done in 2017, and it all seemed to be going well. 12 weeks later, it failed. I had an emergency second transplant to repair the damage. This was even better, and the vision appeared to be improving, and it was the best I’d had in a long time. Unfortunately that failed too with another leak, and needed a third transplant to save my eye. Fast forward a few years, and we’re seven transplants down, and after a serious infection, I lost the sight in my right eye, as the infection detached the retina. Professor Kay worked hard to save the eye, but was unable to save the vision. Throughout all of this, the hospital have been incredible, and I can’t thank them enough for all they’ve done, and continue to do. On 28th August 2020, I was declared legally blind.
Accepting the news
Accepting my disability was certainly a massive role in adapting to my new life being visually impaired. For me acceptance isn’t something that just happens over night, everybody will be different and it might take some people longer than others. I wish I could tell you the moment I fully accepted losing my sight but I can’t, it happened gradually day by day.
The same day I was told by the doctors I’d lost my sight and there was nothing else they could do was the day I accepted what had happened and had to start to make adjustments. Up to that point, I had been through seven cornea transplants and multiple operations, and I was still trying to be positive and clinging on to the hope that some sort of vision could be saved. If I’m completely honest it was tiring, both mentally and physically. My whole life had completely changed in that one moment and looking back now I can honestly say it’s changed for the better.
I was prepared straight away for the need to change and adapt big parts of my life, and I did worry about how I’d do a lot of the things I enjoyed, like how would I cook, how I could get back to work and how I would be able to look after myself. I think what helped me quickly accept my situation and make the changes I had to make was my mindset. I tried to stay positive and rather than see them as stumbling blocks, I saw them as challenges I was prepared to face. I set myself goals every day – there was no way I could do these things all at once, so breaking them down into daily goals really helped. I didn’t see anything as something I couldn’t do, just something I’d have to relearn. Using a boiling kettle again, finding my way around the house and even using my phone were all challenges I set myself early on. Obviously, there were a few mishaps on the way, but through perseverance and a positive mindset, I found that I was able to adapt fairly quickly. These things are now second nature to me.
Another worry of mine was how my family and friends would react to the news. I worried about how they would respond, but more importantly I didn’t want them to look at me any differently. I’m no different than I was before being declared blind, I just now have an excuse for being messy. I made a point early on to ‘own’ my disability, and I think that certainly helped with how others saw me. I had no intention of letting this news stop me doing anything, and by carrying on exactly as I had before, everyone seemed to carry on in the same way too.
Losing my sight inspired me to act upon things I had previously thought about, and actually do them. I’d had thoughts of going skiing, climbing and hiking before being declared blind, but actually being given that news has given me the drive to do them. I’ve since booked a skiing holiday, learned how to play golf, rock climb and kayak, and I’ve also just booked on to a skydive.
I’m sure that, for example, when a blind guy phones up to book a rock climbing session, people aren’t sure what to do, and that’s only natural – it’s as new to me as it is to them. However, throughout all the things I’ve booked to do so far, and the people I’ve dealt with, the response has been really positive. I think what’s helped with that is confidence – I’m confident on the phone, confident when I get there, and confident in my ability. I also feel like I’m there to prove them wrong, and show everyone what a visually impaired person can do. I’m the first to try and do the hardest wall at the rock climb or the most difficult course at the golf club. I’m not there for people to look at me and think ‘that’s nice for him’, I’m there to give it everything I’ve got. Perception is everything, and I think people have a stereotypical view of what a visually impaired person can do – or any disability for that matter – and what they’ll be like, and it’s up to us to change that.
Always being better
I try and live my life by always being better every day, and I’m always setting little challenges or goals to achieve, or big goals, like a kayaking trip or a sky dive. One of the next big challenges I have though is cane training. If I’m being honest, this is something I’m apprehensive about starting, but I also realise this is something I have to do, and want to do, to help me become more independent. I was asked by a friend a while ago about whether I’d consider using a cane, and if I’m honest, I shut that conversation down quickly – I didn’t want to talk about it. I don’t think I was ready to talk about that yet, or acknowledge that having a cane was even something I’d need. But here we are, and as much as I’m nervous about it, I know I need to, and I want to. In a way, I’m quite excited about it, and seeing how much more independence it can give me. At the time of writing this, I’m just in the process of sorting out the training and I’m hoping it can start soon.
There’s been a lot to adapt to over the last year, and a lot has changed, but it’s still early days. I’m proud of what I’ve achieved so far and I have every intention of keeping that going, and I hope that what I’ve achieved so far can show that being declared blind isn’t the negative it can be perceived to be. I’m a true believer in that if you set your mind to something you want, you’ll achieve it. It’s all about your perspective, and remaining positive. Don’t get me wrong, I completely understand what a massive blow news like this could be, but if you stay positive, set yourself small goals, and set about achieving them one at a time, you’ll find that things aren’t that different, they’ve just changed a bit.
I chose to document my story through Turn a Blind Eye on Facebook and Instagram. You can find me at www.facebook.com/turnablindeyepodcast where I post regular updates on what I’ve been up to, what challenges I’ve set myself and more. If you have any questions, head on over there and feel free to ask anything you like – I’m more than happy to help!