The 'dark side' always adds a bit of spice to things in movies and books; the bogey man's been with us forever in a fairly harmless way and for my part he's mostly welcome, except when it comes to health issues.
Whilst not knowing a great deal about the clinical cause and effects of retinitis pigmentosa, I did discover early on that it wasn't a conversational gem. You can't really chuck, 'I've got retinitis pigmentosa, you know!' into casual conversation and expect things to flow. Few people have actually got it and, outside of Google, even less know anything about it; socially speaking you're better off sticking to religion!
Accepting the reality was pretty tough but airing it in the early days was practically ulcer territory, especially where the family where concerned. My wife Pam, of course, has been with me on the journey since day one and knew what to expect down the track. Happily, though, with (son and daughter-in-law) Ben and Sarah and their kids, things dictated their own terms. They adjusted in their own way and to their credit never became over-solicitous or intrusive. As far as others were concerned, the sudden appearance of the white cane attracted all sorts of interest, and even in taciturn Dunedin, polite reticence took a back seat for a while.
I learned that consistency is the drug of choice for blindies, without it we go into acute withdrawal. The chair that was there yesterday isn't a safe spot anymore if it’s moved, lurking somewhere else in the room, waiting to cause pain. Anything not replaced to within six inches of its designated spot has, to all extents and purposes, been 'hidden'. It might sound mildly inconvenient to the rest of you but try spending 20 minutes looking for a tin opener and you'll get my drift. Kids don't do consistency all that well. Their world revolves around distraction. Thus, the toy truck that glued their attention 10 minutes ago could well become a blindy’s roller skate. At this stage in the journey, 'Watch out for Poppa!', and ‘Don't leave that there, Poppa might fall over it’, were drilled into them with the urgency of toilet training.
Abandoning the cane for vanity reasons created more hurdles than tapping away with the thing. Standing aside cane-less in a busy street, whilst waiting for a clear path, was a sure-fire way to waste a fair portion of the day. Likewise, in a crowded pub, ‘Excuse me, I'm a little blind’, won't get you to the bar as quick as the sight of a white cane. I found it bestowed enormous influence at airports, a couple of taps and a sort of bemused pirouette generally attracts most of the staff on duty, all anxious to escort you on and off the plane smoothly and quickly. In one memorable case they extended the care package straight through Australian Customs and Immigration, no mean feat! Judiciously brandished, the cane has mosaic powers; blindies would be ill-advised to venture abroad without one.
Other things that can help
Some blindies thrive on gadgets, I personally don't, but it’s hard to pass up anything that might offer a bit of help. My first proper 'tech' gadget was an iPad and it opened doors that I thought were closing. Suddenly, via Spotify, I could access music without the frustration of trying to read CD labels. With contrast and print-size settings, I could read daily newspapers and books through Kindle.
Prior to this point, lamps had been a convenience more than a necessity but gradually, through trial and error, designated-purpose lights took over. The basic standard, beside the armchair, for close-up viewing and to serve as a landing light; the portable ‘absolutely essential’ for eating out at night; and finally, the pocket torch, guaranteed to allow key entry in under 10 tries.
As print got smaller for me, magnifiers became the next 'must'. Everyone seemed to think they were the perfect gift and, for a while, I just about wallowed in the things, ranging from lit to unlit, and bottle-top to dinner plate-sized. Then came handwriting: from small print, I progressed to block capitals, roller balls to felt tips and heavily lined paper. I always think that taking notes at meetings conveys an air of attentiveness, but it becomes a bit pointless when you can't read your own scribbles.
Retinitis pigmentosa, I discovered, makes a serious contribution to planned obsolescence; aids that were treated as heaven-sent, drifted into the bottom drawer. Cell phones had always seemed better suited to other people, but when Apple and co. decided we didn't need number buttons anymore, the mild dislike morphed into active loathing and the ‘smartphone' joined the obsolete lamps, magnifiers and pens in the bottom drawer.
I became quite desperate to believe that there was something out there to fix things and dashed around grasping at anything that remotely promised help. It was all pretty much downhill from there on. The TV faded to a large grey box, becoming a means of frustration rather than a source of entertainment, all of which forced me to start thinking like a blindy, which is when you really start to cope and live again.
Born in the UK, our ‘white-caner’ columnist, Trevor Plumbly, a retired arts and antiques dealer from Dunedin, was diagnosed with retinitis pigmentosa more than 15 years ago. In 2008, when sight loss put a stop to the antiques dealing, Trevor and his wife Pam relocated to Auckland to be closer to family.