You need to consider copping an attitude when someone tells you you're going blind; I didn't have one at the time, but ‘needs must’, as they say. Despite a love of language, a spade is still a spade for me, especially when it comes to my medical doings. I don't deal well with the Latin or the verbal feelgood stuff and when I heard the long-term effects of retinitis pigmentosa (RP) described as “a journey” I did a bit of a double take. The guy obviously meant well, but he made it sound like I was going on some sort of excursion. ‘Journey’ is a nice enough word, but it didn't indicate that in my case it was destination only and the view wouldn't improve along the way.
The trip’s taken a fair while; RP's a slow mover and we have been travelling together for around 25 years now. But it now looks like it’s finally taking charge, moving me from mild inconvenience towards disability. Initially the usual indicators – loss of night vision, spillages and tripping – were easily downplayed, and were even the butt of family jokes, but they eventually led to increased vision loss and the more serious deterioration I'm facing now.
Being a reflective sort of bloke, I felt that adopting an attitude might help. I found there's heaps of literature out there about kitting yourself out for ‘the journey’ – some educational, some inspirational – but a heck of a lot of it appeared to feature blindies a good many years younger than me. So, at the risk of being labelled curmudgeonly, I'd like to point out to the scribes that when it comes to sight loss there's a fair few over-70s out there that would like a bit of column space too. As one of the creaking majority, I feel age confines us to coping rather than achieving and, as such, we're considered less newsworthy.
The old and the restless
We oldies don't do the 'gosh-gasp' stuff much – an account of groping around for a misplaced cell phone isn't going to rank as 'gripping' – but little successes constitute milestones after you’ve stopped kidding yourself that sight loss isn’t happening to you. While losing the ability to see clearly, I realised the importance visual distraction plays in communication. After feeling surplus to chitchat that began with ‘look at’ and ‘did you see…?’ I became introspective for a while, but hibernation got a bit boring and it struck me that I needed to get out there and be more proactive. Obviously, sport was out – at this age, who's going to pick me for anything other than a spelling bee? The old brain was still trundling along OK, but I needed an attitude if I was going to live with this thing comfortably. My optical journey might be a one-way ticket, but having a guidebook couldn't hurt. So I researched, read, chatted and googled before reaching the conclusion that dealing with sight loss would need to be customised if I wanted to adopt an attitude and keep a sense of humour. Most of the literature was pretty clinical – a bit like those manuals you get with electronic appliances – aimed at the less impatient and more determined. Previously innocent words such as 'enable' and 'empowerment' leapt at me like personal accusations, highlighting my lack of attitude and inability to follow the prescribed path.
Finding the path
Still lacking attitude, I settled for the see-saw principle, which allows me to be 'out there' or 'reclusive', as suits. The research indicated that the ‘out theres’ challenge sight loss, daring it to dent their confidence, so that seemed a good option for the range of challenges the books said I'd face. My luggage was packed to suit the climate – the computer that reads stuff aloud without cringing, audio books, Ruby magnifier, a smart speaker and, of course, the old white cane – so I was as well-equipped as any traveller could hope to be. Getting an attitude, however, needed a mental tune-up.
I tried using light-hearted throwaway lines like, "Crikey, it’s only a disorder, not a death sentence!" thinking it would suggest amused cynicism, even resilience. People like stoics and I quite fancied the role. I was on a winner until I discovered that a lot of 'out theres' didn't do flippancy that well, so I directed my thoughts internally.
Those of a similar age to me may remember the effect transcendental meditation had on The Beatles – they practically morphed into deep thinkers overnight, just by sitting around cross-legged and looking pensive. This led me to consider that this might indeed be my key to attitude. I’d read that after sitting for days looking at their navel, those guru blokes would say things so profound that even their mates couldn't understand them. That's gotta be attitude! It might not change reality, but it might shift it somewhere more convenient.
Thinking my goal was minutes away, I tossed my shirt aside, gazed downwards and chanted my mantra: 'attitude'. After searching for my navel, I discovered that a love of draught Guinness and meat pies had constructed a sort of overhang that blocked my view. I considered gazing at my kneecaps instead, but it became clear that those old gurus knew what they were doing when they went with the navel as the route to the inner self. Just as I was toying with the idea of using a mirror, I heard Pam's car draw up… rather than explain the situation and its possibilities, I abandoned the project.
For further consideration
After all that, I'm still finding the coping role complicated. A lot of it relied on other people’s perception and I don't want to stand out in the crowd; but neither do I want to get lost in it. So I’ve ruled out ‘attitude’ as it’s just too tough at my age. ‘Swagger’ only proved that overdoing the white cane thing out and about, just lent a new perception to social distancing. I might have another stab at ‘reclusive visionary’ – serious image is all the rage lately.
For those of you professionals who face explaining the 'journey’ to a patient, please don't advise attitude; it didn’t work for me. Perhaps I should aim for ‘aplomb’? Now there's a thought.
Born in the UK, our ‘white-caner’ columnist, retired Dunedin antiques dealer Trevor Plumbly, was diagnosed with retinitis pigmentosa more than 20 years ago and now lives in Auckland.