Originally published in August 2021, this post talks more about my condition, the impact on me and my family and the charity fundraiser my sister and I undertook for The Macular Society.
First published: 11 August 2021
It’s just coming up to 10 in the evening, and as I’m sat waiting for the train to leave Paddington after my longest training walk so far I can’t help but reflect on everything that’s happened in the past 8 weeks.
My sight loss journey has reached the unenviable milestone of being registered visually impaired (or partially sighted in old money). I have almost walked the equivalent of London to Newcastle and, between my sister and me, we have raised over £2,500 for the Macular Society. Added to this I have found a vibrant visually impaired community online via my blind man with a backpack Instagram account; all of whom are sharing their own experiences along their sight loss journey and demonstrating how we all handle our various stages of visual impairment in our own unique ways. This all makes me feel very fortunate (if you discount the sight loss thing!)
But what is it?
I have a condition called Cone Dystrophy. Although genetic, I’m the only one in my family that has it. The condition affects the macula which is the area in the middle of the retina about the size of a grain of rice (funny how we always measure things in relation to the size of food) which processes detail, colour and central vision. Without this area, we can’t do the things we take for granted such as driving, reading and watching TV. I’ve known about this diagnosis for about 3 years but it’s only been recently that it’s had a significant impact on me and my family.
Although I have had a form of visual impairment for as long as I can remember up until 6 months ago it could always be fixed via lenses or laser. Now however, there is no help. I often test myself, as I’m certain many of us with progressive sight loss do, to see where my vision is, and I can confidently say it’s inconsistent! One day I’m able to follow a recipe without needing to put it under my document reader, and the next I can’t read the name of the meal. One thing that is consistent is? Don’t ever ask me to read the specials board if we go out for dinner.
Another day, another train. This time heading to Oxford for a routine hospital appointment. I find these journeys a great time to reflect, and recently I’ve been thinking about my upcoming fundraiser for the Macular Society.
Not long after being registered as visually impaired I decided to try to do something to support this little known (but none-the-less important) charity. The Macular Society provide much needed help to people like me through their network of local support groups, their online social media feeds and groups and their telephone counselling service.
It is these services – combined with them being the only charity in the UK committed to funding research into treatments and cures for the thousands of us affected by all types of macular disease – that made me want to do something; even something as simple as walking, to help support them.
Walking 100k from London to Henley over 2 days is of course a bit more than a gentle stroll to the shops and back! I am under no illusion that this will be tough (especially after the blisters I got from walking 30k from one side of London to the other), but after all the overwhelming support my sister and me have had so far it makes me (and her) all the more determined to complete the challenge and raise as much money as possible.
Why am I doing this?
In order to explain why this is so important, I need to provide some context of my family life. My wife Kath and I have been together for almost 20 years since our early 20s and we have two amazing kids, one 18 and the other almost 9. In this time, we’ve had our challenges: Be they juggling finances to ensure our eldest had the diet they needed to keep their asthma in check and to keep them out of hospital, or providing an inclusive environment to help our autistic son thrive in a neurotypical world. Kath and I have always worked together, including when she went through risk-reducing cancer surgery (which is a story for another day). But we both feel this is different: with every other challenge we have faced there have been things that can be done to mitigate (even if it is 10 hours of surgery followed by 12 weeks of recovery).
This time we are bystanders.
Aside from plenty of coloured veg and fish twice a week, there is nothing that can be done to stop or even slow the inevitable descent into blindness (or more specifically, severe sight-loss); and that is why I’m walking. To raise money, to raise awareness and to make the most of the time I have while I can still have my independence and I can still get out and see the world.
Yes, it’s as simple as that. Still, never one to finish on a downer, I’ll leave you with a Tommy Cooper joke.
A blind bloke walks into a shop with his guide dog. He picks the dog up and starts swinging over his head. Alarmed, the shop assistant calls out ‘can I help, sir?’ ‘No thanks’ says the blind bloke ‘just browsing’
So if you ever meet me in a shop and I’ve got a Labrador swinging above my head, don’t worry, I’m just browsing.
Thanks for reading.