Iain Riddell, lay member of CHECT’s Scientific Advisory Committee, reflects on how childhood memories are shaped by the realities of retinoblastoma…
Among the mass of childhood memories rises the parental decision on a regular basis that an exciting family trek was required. So the four of us, parents, older brother and I, would set off with the dog to find a canal system across north London or up the Lea Valley.
These walks always seemed like a massive waste of time at whatever age which is not to say I didn’t enjoy or appreciate the act of walking. Right through my 20s you would find me happily trekking back and forth across parts of Wolverhampton or Telford for work purposes or shopping or visiting people.
Headphones on, sunglasses on, eye flicking about right, left, up, down, pulling in details of information, squinting when winter sunlight flashed between railings or through tree trunks or at the dreaded night-time car lights; heavy, hefty glasses bouncing up and down on the nose with every step.
So why the ambivalent memory of parental enforced family-walks? The purpose of family walks was partly that they were uplifting and illuminating. Only in adulthood did it twig that family walks were mostly about concentrating on uneven surfaces, mud edges, tree limbs reaching out to snatch glasses away, accidentally walking into oddly parked cars (which appeared from nowhere). So I never spotted the bird of prey on the Regent’s Canal or had the visual energy to appreciate the difference between an oak leaf and an ash leaf or notice the rabbit the dog had rustled out from hiding.
Yet oddly walking represented independence, A-level maths tuition (got a C grade by some miracle) meant nearly two hours of walking through Cardiff’s back pathways once a week in all weathers getting back and forth. The visual uncertainty of rain coated +14 bifocal glasses with significant axis (in practice vision was restricted to a small section of the lens) was preferable to having to navigate the bus system.
The bus system represented a series of exhausting visual challenges not least of which was ensuring you got on the right bus and moving through crowded pavements populated by two-eyed people who seem not to know how to use them.
Following an operation six years ago to replace the surviving eye’s lens that was lost to cataracts in 1981 (the heavy glasses are now a historical artefact) I have got back onto bicycles. Cycling was abandoned in my early teens (partly as I kept walking into lampposts and signs). Cycling has fortunately replaced walking as the main means of independent local travel for work and visiting, and supplanted swimming for exercise.
Swimming was another series of sometimes disastrous visual calculations. Starting with, do I leave the glasses in the lockers, vision reduced to squiggly lines?
‘The locker is middle row, four from the left or was it among the lockers on the right hand wall or left hand wall, easier to swim alone than with other people as haven’t a hope of seeing anybody waving.’
‘Does somebody mind fetching my eye from the bottom of the pool, I have had a growing spurt and the suction of my goggles coming off popped it right out and to the bottom it plummeted.’
‘Is there enough space to get past these slow swimmers? Oops apparently not, ouch that was the wall (no depth perception).’
The replacement of my internal lens after 29 years brought along something called peripheral vision. I discovered I no longer needed to point my nose directly at whatever it was I wanted to see, nor did I have to tip my head to ensure that the bifocal line distorted the bus information while trying to doge through a crowd.
The abandonment of heavy bifocals also enabled the realisation and articulation at 34 of decades of shoulder, neck and arm pain, discovering that they were most likely caused by dual action of being unifocal and managing the bifocal line by adjusting the head position stretching a variety of nerves.
Months of physiotherapy helped realign the nerves reducing the pain and I gained 1.5 inches of height as the hunched shoulders for which I was noted from primary school were no longer required.
While skiing in Saalbach after New Year I was reflecting upon the disparity that retinoblastoma and Rb treatment has caused in visual ability. One day crawling across a basic slope unable to see the difference between up and down, or notice significant mounds of snow ready to hurl me from my skis, utterly reliant on hearing and skill to keep me on my feet and balanced. The next day whizzing past the majority of folk, hurtling down steep black runs with a certain flare as the ambient light had produced some striking contrasts on the pitches.
I wondered what level of determination would overcome these realities of Rb and Rb treatment.
As I peeled out of the layers of ski gear in the evening and considered how my Rb-related lipomas were reshaping my skin and muscle structures; neck, shoulders, calves, thighs, arms, chest; how many of the life defining choices so far taken were shaped by the consequences of adjusting to the realities of Rb and Rb treatment?
A shorter version of Iain’s article appears in the Spring/Summer 2016 edition of our InFocus newsletter – out now.