Originally posted in early December only a few weeks before discovering I was Severely Sight Impaired, this article discussed the various stages of grief that we go through after a traumatic event such as discovering you are losing your vision. Quick update – As my vision continues to deteriorate I am constantly readjusting and resetting my expectations. I really don’t think I will reach acceptance until everything settles down. Having said this, I can confirm that my reluctance to use my cane has completely disappeared – but that’s a story for another day.
First posted: 1 December 2021
In all of my writing, I try to focus on the positives of a situation rather than the negative. This isn’t to say that I don’t get down days. I do, a lot. But I try to get back to the positive as dwelling on the shit is a very slippery slope (quite literally).
I have many things to be grateful for, two amazing kids, a wonderful wife, a nice house, and financial stability (most of the time). But then there’s the elephant in the room, my eyesight. I saw a quote a while ago that said “central vision loss is a bit like seeing a penny out of the corner of your eye and then walking into the elephant right in front of you” (I can’t remember where I saw it, but if you are reading this and it came from you then please let me know so I can give credit where it’s due!)
Losing your sight can be debilitating but in my humble opinion it’s not the worst sense to lose. Don’t get me wrong, not being able to make out my wife’s face from more than a few metres away is one of the worst situations I find myself in, but I still have the sense of touch to trace her face that I know so well, I still have full hearing meaning I can still enjoy going to a gig, my sense of smell means I can wake up to the aroma of a fresh loaf of bread baking in the morning, my taste helps me to continue to savour a nice crisp glass of white wine on a Sunday afternoon and I still have full mobility meaning I can Dad Dance till the early hours.
There is a constant battle going on inside about the level of sight-loss I have. For example, at my wife’s birthday party I didn’t use my cane once and spent most of the night prancing about the dance floor (no idea who I was dancing with most of the time, but I think the Dirty Dancing lift with someone who I can only describe as my uncle was especially excellent – the judges on Strictly would have scored a solid 7 for that one). Not once did I fall over or spill a drink. I walked into a few tables and spent a good 10 minutes talking to one of my cousins before she pointed out she was wearing my wig, but that could as much have been down to the Good Old Boy as the lack of vision.
Only a few days before the party, I attended a charity coffee afternoon and was the only person there using a cane making me very self-conscious, although this could also have been because I was the only person there under the age of 60!
We constantly measure ourselves against our peers and it’s often tough to justify using or not using something that others do or don’t. We all know that the hardest thing to do is to ignore everyone else and do what’s best for you.
Recently I was talking to someone who also has macular disease, and he mentioned an occasion when he joined a blind bowling team. He thought he’d be the star of the show seeing as he was the only one with some vision but after an entertaining display from the rest of the team leaving him stone-dead last, he realised that we all adapt to our sight loss in different ways to overcome these disabilities and perform acts that others would not think possible. Incidentally, he was told he’d be welcome back any time they needed a sub, but for him to wait for the call – It hasn’t come yet, but I’m sure it will soon!
Being told you have a progressive illness of any sort will most likely have a traumatic effect on anybody and the most difficult thing to do is to come to terms with it. There are five well-known stages that people often go through before finally reaching the point of acceptance if you ever do. I’d like to talk you through my progress through these stages now.
Stage 1: Denial
After being told I had Cone Dystrophy I spent the following two years pretending that as it had taken nearly 40 years to be noticed, chances are I would be well into my 70s before it has any real impact. By which point it won’t really matter. I’ll have stopped working and it will give me an excuse to play with the grandkids (hopefully). I would still be able to do all the things I wanted to in the meantime like renovate the garage, buy a classic car, drive down the California coastline (notice how it’s all driving related?). Besides the regular check-up’s with the consultant and the annual eye tests for my driving licence this was exactly the case. There was a slight hiccup during my 2019 eye test where I struggled with the final letter on the most important line (I will curse that E from now until eternity).
Little did I know that instead of 30 or 40 years until I was impacted, it would be a little over two when I would be hanging up my driving gloves. I was surprised how well I took not driving (probably a Global Pandemic helped to soften the blow). But in general life went on much the same as it always had.
Stage 2 – Anger
Although life went on much as it always had, small frustrations started creeping in. Simple things like reading a magazine or checking emails on my phone became more and more frustrating to the point that I would get short tempered when trying to concentrate and the kids or the dog were playing up.
Stage 3 – Depression
The depression was more difficult to spot as I’m generally a half-full kinda guy. That said, I found myself struggling more and more to find the positives, often worrying about what the future may hold. Questions like “how long will I be able to keep working for?”, “how bad will my vision get?” and so forth began to keep me up at night.
Living with a practising therapist means that I am acutely aware of the importance of tackling potential mental health problems before they become critical. My wife refers to this as “clearing the basement” which essentially means dealing with the small things that we all so easily push to the side for later. The problem with doing this is when something life-changing comes along (like going blind) there isn’t enough brain space to handle it leading to depression, heightened anxiety, and increased stress.
Although my basement was by no means full there were warning signs that things could overflow and so, after much procrastinating, I booked myself in for some counselling sessions. Many sight-loss charities offer a free counselling service, I chose to use the services of the Macular Society of which I’m a member. It is also one of the only charities that specialise in research into macular disease.
Over the next few weeks and months my counsellor helped me to clear my basement, allowing me to take steps I may have otherwise not taken such as contacting my local council’s Sensory Needs team to request cane training, enrolling on a “teach yourself braille” course and generally being more amenable to using various aids to help around the house.
I still get many down days, I often hate leaving the house with my cane or having to ask for help to do simple things like going to the tip, visiting my mum, or taking my wife out for dinner on her birthday so she can have a glass of wine. More than anything, I dearly miss sitting down of an evening with a good book.
Funnily enough, as someone who has always been obsessed with cars, giving up driving and foregoing the chance to tinker with classics is not the worst thing about not being able to see. The worst thing is not being able to read. There is something so relaxing about sitting down with a trashy crime novel (I highly recommend the Crucifix Killer series) or reading about the history of the Bentley L-Series V8 (Classic & Sports Car) and this is the thing I yearn to do more than anything. I know there are audiobooks and podcasts (the You’re Dead to Me podcast on BBC Sounds accompanies me on so many of my walks) but that’s just the point, I listen to these whilst doing something else, it feels alien to sit of an evening with my headphones on listening to the latest Jack Reacher.
Stage 4: Bargaining
This nicely leads me to the bargaining stage. For me, this is the internal dialogue constantly going on. It’s a little bit like the angel and devil on Tom’s shoulders in Tom and Jerry when he’s working out his next devilish plan to trap the mouse. In my world, the devil is my old-sighted-selftelling me that I can do everything I always used to do. The self that has run the post-gig gauntlet from Brixton or Camden to Paddington to catch the last fast train home.
On the other shoulder isn’t necessarily an angel (more likely Droopy), making me doubt my abilities. Telling me that I can’t take the dog for a walk, let alone catch the train to the office.
The reality is that I can make a loaf of bread without my talking scales, and I could get to my mum’s place in the next village without assistance, but they would be significantly more difficult.
One of the biggest internal debates I have is using my long cane. Very often when people see the cane, they automatically assume I am totally blind. This perception in itself causes a lot of angst as I feel I should explain that this isn’t the case and almost apologise for using a tool that makes such a difference to my life. I’ve seen many people overcome this internal debate by decorating their canes or giving their mobility aids a name. So perhaps I need to get some band merchandise or some automobelia to go on it. Maybe I’ll start by coming up with a name for it. I wonder if a cane is male or female?
Right now, I’m sat on a Great Western Railways train heading into London. A journey I’ve done more times than I can count. A member of their mobile assistance team has met me at my local station in Tilehurst and there was someone on the platform in Reading to help me across the station. I never thought I would be comfortable holding a complete stranger’s arm as they lead me from platform to platform and into the train.
Stage 5: Acceptance
Do I accept my disability now?
I accept that I have a disability and I accept that it will only get worse.
I struggle accepting the limitations my disability brings. I don’t think neither the Devil nor Droopy will ever overcome the other and they will continue to fight this eternal battle.
Going back to my point at the start of this essay, there are often dark days, full of frustration and angst at not being able to do what I once could. These demons will continue to plague me for years to come – most likely forever. But I’ve come to accept that I need more help (perhaps resigned myself is more appropriate) no matter how begrudging that is.
So, if you’re reading this and are struggling like me with your own disabilities, then I’d just like to say that you’re not alone. Whether it’s the vibrant disabled community online available to give support and advice, close family and friends who are there to listen or one of the many amazing charities dedicated to supporting those of us most in need.
And once you’re ready to take the next step towards acceptance, just remember there are so many fantastic resources and tools available that make being disabled much easier to adapt to that you should be in safe hands.
As ever, thanks for reading.