My Sight Loss Journey – Part 1

Overview

This is a series of posts exploring my sight loss journey, in the hope that it raises awareness and helps just one person.

Growing up

While growing up, I recall my Grandad having a sight issue, I was a child and really didn’t think much of it. He had adapted well and while he used a white cane while out, the only time I recall him making a noticable adaption was playing snooker, where he couldn’t tell the difference between some of the balls. I was probably around 9 or 10, and it didn’t strike me as being different.

When I was in my teens, my mum ran into a parked pick up truck. No one was in it, and she and my brother were unharmed. But this is when my mum realised that despite passing eye tests for driving, she wasn’t capable of driving safely with her sight loss. She took the decision to immediately stop driving and surrender her licence.

My mum only discovered that the eye condition was inherited when she started showing symptoms. Her dad had never shared that it could happen. I was fortunate that my mum told me that is was a possibility, although there was no way for us to tell if it would happen. Being a teenager at the time, I was self-absorbed and can’t really remember how my mum dealt with the sight loss.

My mum did share that I may get it, and I am pleased to have known it was a possibility.

Signs of trouble ahead

Through my adulthood, I maintained regular optician visits and paid extra to get photos of my eyes taken. I had a lovely optition who also treated my mum, so knew what to look out for. Over time my eye sight deteriorated but could be managed with optical lenses. One visit I recall my optician saying that it was time to have further checks done, as the optical lenses were not being effective. There were no physical signs of issues.

I was referred to the local hospital, after a few months wait, I was called in. They did less than the optician in terms of checks and told me there was nothing wrong.

Confirmation

About 6 months after the hospital assessment, I was about ready to buy a new car. I knew that it was possible I wouldn’t be able to drive in the coming years, so after finding the car I wanted, a Mercedes AMG E63, I booked an appointment with the opticians to see if I had at least 2 years driving left. This was the period I was looking to take finance over.

On inspection, the optician delicately informed me that my sight had deteriorated since he had last seen me. Reluctent to criticise other professionals, he said that the hospical assessment was incorrect. He went on to spend time with me, asking if I had time to come back later in the day and he would help me find a consultant specialist at the world leading Moorfields Eye Hospital and write to my doctor to get me refered.

The optician was amazing and on return helped me find the right consultant at Moorfields and then wrote to my doctor requesting a referral.

Dream Car Fun

After finding out that I had less than 6 months of driving left, I started looking for a second-hand Mercedes AMG E63 that I could get quickly. My plan of leasing a new car was no longer an option with a three month lead time.

It didn’t take me long to find a white E63 with performance pack less than an hour away. A quick test drive the next day and I knew I had to have it. I arranged to pick it up the following weekend.

The car was everything I had dreamed of, knowing that this would be my last car, I was fortunate in being able to finance the car and enjoy it at every opportunity. For many with sightloss, there isn’t a warning or opportunity to make the most of the limited time. While I lost alot of money on owning the car, I would do it again tomorrow. It was my last chance to enjoy driving and I did!

A Trip to Moorfields

I was referred to Moorfields and invited down for initial assessment in September 2015 at the City Road London Hospital. I recall having lots of tests, but there was no clear diagnosis. Logically I knew that the visit wouldn’t change anything, but I left the hospital feeling very emotional and deflated with no more information than I had walked in with.

While there, I was offered the chance to join a rare genetic research project, where they would sequence my DNA and that of other relatives to help identify the gene causing the issue. My daughter was 8 months old, so the idea of being able to identify the gene and let her have the ability to check for the issue if she wanted to, really appealed to me. I am also the oldest of 4 boys, so this would also allow my brothers the option of finding out if they would have the same sight issues.

To be continued….

I will continue sharing my journey in another post, watch out for part 2.

Tell me what you think in the comments below or on X @timdixon82