Overview
This is a series of posts exploring my sight loss journey, in the hope that it raises awareness and helps just one person. If you missed Part 1, read My Sight Loss Journey – Part 1.
Surrendering My Driving Licence
In late 2015 I reduced my driving, especially at night, when I felt I was doubting myself. I decided that I would need to stop driving when I didn’t feel safe and not to wait until something happens. I was still legally ok to drive, but I had noticed I was doubting my eyes and not always seeing what I thought I was seeing.
Deciding to give up driving was never going to be easy, but I needed to do it on my terms. I decided to stop driving and had a final drive in the Mercedes on the 15 Nov 2015.
Since giving up driving, I have driven on a private road in mid 2016. but even at 15mph, it was clear that I had made the right decision. I couldn’t process what I could see at the pace I needed to, second guessing what I could see at every turn.
An Encounter with SuperNova
During all of this, I was working full time with trips to China. I was fortunate to have great support from my manager and colleagues. I knew I needed to adapt to be able to remain employed. At this point, I still had the view that I may have to give up work someday because of my sight. It was a big concern as I wanted to be able to continue supporting my family.
I contacted Access to Work, a UK government scheme to help me with the technology and support to keep me in employment. They assessed me and offered a few adjustments to help me. Based on the recommendations, my employer provided me with SuperNova screen magnifier that allowed me to zoom in and out on the computer while working. I was also provided with a stand to raise my laptop, a separate keyboard and a handheld long distance digital magnifier that would allow me to zoom in on whiteboards and presentations.
SuperNova sadly didn’t agree with my multi-monitor setup and didn’t behave well, so I rarely used it. As I said, I was traveling to China for workshops and found the magnifier helpful, but I also learnt that the pace of the room can be quicker than I can keep up with. Lifting a magnifier and finding the location, to then put it down and write something, became a little challenging. I ended up just standing up and moving to the boards to see them.
The Symbol Cane
In October 2017 I was visiting London for work, during the trip I had two occasions that made me realise I needed something to alert others to my sight loss. The first time was in a Five Guys and asking about the items on the menu, the member of staff just pointed at the board and said they are listed there. I had to explain about my sight loss and that constant telling people takes it’s toll emotionally. On the same journey, I was trying to get into the toilets at Kings Cross, but I couldn’t work out where to put the money. I was wearing a suit and must have looked really strange to anyone passing by. After these experiences I realised I needed to carry something to alert others to my sight loss, to make it obvious why I may not be acting as they expect me to.
I ordered a Symbol cane from the RNIB and started using it to alert others to my sight loss. It took quite a bit of getting used to, as it feels like you are holding a big flashing sign asking people to look at you. I had to accept that in order to make my life easier. I soon became used to using a symbol cane and people knew that I needed a little more assistance.
DNA Diagnosis
The Genomics Project took many years, but finally in 2019, I was informed that the gene with the issues was a spelling mistake in my GUC A1A gene causing Cone Dystrophy. For the first time since starting to lose my sight, I had a diagnosis and one that my brothers and children could be tested against, to see if they will develop the eye condition.
Registered Sight Impaired
In May 2019 I visited Moorfields again. After multiple tests and discussion with the consultant, it was decided that I could be registered Sight Impaired. When you are registered sight impaired, you are provided with a CVI (Certification of Visual Impairment). The CVI is a key piece of documentation in proving your sight loss and accessing services and care you need.
I find the trips to Moorfields emotional, although I know that I am not able to change the diagnosis and don’t expect anything to materially change from a visit. I often leave with a heavy emotional toll as I process the confirmation that my eyes are worse and there is nothing that can be done. It isn’t news to me, but it does seem to induce a period of emotional turmoil while reflecting on the information.
Please Turn Off the Lights
I was getting increasingly sensitive to light and through the support of Lincoln and Lindsey Blind Society I found glasses that helped me. I never leave the house without sunglasses on now, although I have changed over time to Bluetooth Sunglasses to allow me to listen to my phone without blocking the environmental noise out. Initially I found wearing sunglasses all the time, and indoors, a little unusual. I felt like I was breaking social norms, but now it is second nature. The biggest complaint I get is from my wife who can no longer see my eyes, this is because I can drop off to sleep without her noticing.
Becoming a Trustee
In 2019, I joined the board of trustees of Lincoln and Lindsey Blind Society. The society provided important support to my Grandad and my Mum when they were alive, helping them live their lives with sight loss. As a trustee, I can give back in a small way to a charity that helps the local visually impaired community.
Stepping it up and taking on JAWS
In early 2020, I went through Access to Work to update the technology and support I had available to me. This time I went for Fusion (JAWS Screen Reader and ZoomText Magnifier) software. I was keen to have my computer read more out to me and help reduce the strain on my eyes. As part of the assessment I also received an Orcam My Eye and a table standing high magnification camera for seeing presentations and whiteboards.
The Orcam MyEye would allow me to program colleagues faces, so when I went to the office monthly, I could identify them as they walked past. Still going to many workshops, I was really looking forward to the camera and keeping up with meetings. Sadly, before I got to use them in earnest, we were in lockdown due to Covid.
To be continued….
Thanks for reading this far, I will continue sharing my journey in the next part of this series.
Tell me what you think in the comments below or on X @timdixon82
