How to go blind without anyone noticing

Or: what to look out for while you’re losing your sight           

Words & images © Paul Ransom

Neuro-plasticity. Neural redeployment. Brain reorganisation. You encounter this terminology a lot when you read folks like Dr David Eagleman. In his 2020 book Livewired, the California based neuroscientist unpacks the remarkable adaptive mechanisms of the human brain. It’s a great read. However, on a personal level, the side effect of all this brain talk has been to clarify the challenge that looms right before my eyes. Namely, deteriorating vision and the possibility of going blind. Specifically, how to navigate this in both body and mind.  

The plastic genius of the ‘delicate pink magisterium’ not only underpins the gathering of sense data and its moulding into a sustainably coherent view of self and world, but in doing so encapsulates the nature of the task ahead.

• How to adapt to the flow of increasingly fuzzy visual data
• How to create new behaviour patterns (and avoid collisions)
• How to adjust emotionally and alter my expectations going forward  

Ultimately, I have little choice. I will adapt. It’s simply a matter of when and how.  

Yet while my brain busies itself repatching its networks, I am already counting the bumps and bruises. As the ground slowly shifts out of focus, smashed toes and banged shins are becoming the norm. Misjudging kerbs and stairs is now a regular hazard. Cyclists border on the invisible. Menus are pretty well unreadable. More problematic perhaps are the head injuries. In the last three years I have misread enough door frames and cupboard corners to knock myself out at least once¹ and leave behind several lumps.  

It’s not all about collisions though. As someone now classified as legally blind I know I could fold myself into the embrace of the disability community – the services, support groups and fellow travellers that swirl around the sector and offer everything from practical assistance to advocacy and a sense of belonging. Indeed, I could legitimately identify as disabled.

This is where the blindness challenge gets super tricky. On one hand, I need to change the way I move around the world, but on the other I am inclined not to change. Slowing down, being more mindful, and taking a little extra care crossing roads and chopping vegetables is clearly beneficial – but what about my story of self? Should I rush to alter the rituals of my identity and rewrite the various narratives of vanity and meaning? Do I change who I am simply because my eyesight is failing?

To a large extent this is analogous to the challenges of aging. How do we deal with decreasing capacity as we stumble towards our inevitable end? Our brains maybe plastic – although this too declines over time – but our habits of thought and action are more likely to be rigid. Physically and psychologically we are thus confronted with the task of balance.

• Graceful acceptance vs declinist woe   
• Healthy determination vs denialist refusal
• Hard reality vs the softer edges of belief
• Due care vs cotton wool
• Self-worth vs the kind of pride that precedes a fall  

These are common conundrums. The visible deterioration of eyesight simply brings them into focus, figuratively speaking. The arc of decline is literally happening as I watch, as I misread yet another price tag or narrowly avoid being run over…again. As such it is rendered more immediate. Less deniable.  

That said, I do not yet find myself mired in a melodrama of decay. I was born with a basket of eye issues – myopia, colour blindness, cone dystrophy, astigmatism – and as such have been navigating a blurred terrain since infancy. My eyes effectively scuppered my boyhood sporting ambitions. At school, they meant I had to memorise, rather copy from the blackboard. Later, as a lecturer, I struggled to read student assignments. It wasn’t until 2017, after a large macular hole abruptly opened up in my left eye and my peripheral vision walked off the job in solidarity, that I was classified as legally blind. Today, the smartphone is little more than a portable clock, and I am writing this piece on a 27 inch monitor, using a suitably enormous bold font. However, I can still read most of the subtitles at the cinema and frame up lovely photos, and as yet there is no guide dog or white cane. Neither have I lost a finger in the kitchen. Then there’s the table tennis variation my friends and I invented, using a big white ball I can actually see. Point being, not all is dark.           

Furthermore, it is likely that a lifetime of vision impairment has prepared me for the recently accelerated downturn. In a way, I have long suspected this bridge would require crossing. (I was in my teens when an optometrist predicted² I would likely go blind in my 60s. I am now 55.) Nevertheless, the practical and mental challenges are mounting and, as such, driving me to adapt. Time for some serious plasticity.

As a child and young adult I developed all manner of bluffs and work-arounds to hide my disability, as much from myself as anyone else. I got used to guessing, making do and near misses.

Though my brain is doing its adapting in the quiet dark of my skull, the conscious me is struggling in the noisy brightness. Out here, deprogramming decades of habitual behaviour is a big ask. For example, I am already actively recalibrating how I move – the speed, the level of close attention, etcetera. The body wants to locomote in its comfortable grooves and the mind wants to let it. My challenge is to create new grooves…before the invisible cyclist arrives.

Dancers and athletes are used to the fine details of bodily flow, but most of us simply bustle around without a thought. As my sight declines and the impact injuries mount, I am being impelled towards a greater mindfulness, a more attuned presence.

Difficult, easy to forget, and sometimes annoying though this maybe, there are clear upsides. Aside from the practicalities of not imperilling toes, butchering fingers or faceplanting in stairwells, you don’t need to be a Buddhist monk or short sighted stumbler to profit from the practice of attentiveness.

The most immediate and apparent benefit of which arises from the friction between habit and attention. Old and new. Assumption and evidence. In my case, encroaching blindness has triggered a root and branch review.

What, if anything, is sacrosanct and what can be adjusted or de-listed?

Losing my vision is making me look at everything anew. More than pesky door frames or illegible menus, this is about identity. The stories I tell myself about who I am.

• What do I prefer to believe about myself?
• How do I navigate the world?
• How do I respond to adversity?
• How do I wish to represent myself to others?
• By what mechanisms do I create and sustain meaning and purpose?

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• Where is the line in the sand, beyond which said meanings and purposes become unattainable or are rendered delusional, destructive and redundant?

As indicated above, I could easily veer down the disability road. I already have the pension card and the government appointed support worker. In addition, I am fortunate to live in a First World country where the stigmas and disadvantages attached to disability are at least being openly addressed.³  In 2021, I could play the disabled card to my advantage. I could engage with an entire community of vision impaired people or become an advocate. Opportunities also exist for me in the disability arts sector which, as a sometimes frustrated creative, I could readily exploit.  

Yet here I resist; the reasons for which many and complex. As a child and young adult I developed all manner of bluffs and work-arounds to hide my disability, as much from myself as anyone else. I got used to guessing, making do and near misses. I learnt to accept I would never play tennis, drive a car or be able to colour match with confidence. I now operate in this mode with considerable aplomb. In fact, I like myself for being so adaptable and improvisational.

However, it is also fair to suggest there are elements of shame, anger and self-loathing in my reluctance to dive into the ‘disability identity thing’. I would be lying if I denied it.  

Pondering this, two incidents from Grade 7 (1978) stand out now as being deeply illustrative in this regard.  

• After years of wearing ‘Coke bottle’ glasses and being largely shunned – especially by girls – my schoolyard cool skyrocketed when I turned up with contact lenses. I went from irrelevant, brainy dweeb to boyfriend material almost overnight. Though I lapped up the increased attention and soon enjoyed my first ‘proper’ kiss, I was not so blind as to miss the elephant. I remember the penny drop moment. I think her name was Kelly. She had never strayed anywhere near me previously. As she giggled and smiled at me I thought, so that’s all it is…how I look. (Or something to that effect.)⁴

• Following the contact lens revolution, I was feeling confident enough to try out for the school cricket team. I fancied myself as a batsman. After one or two sessions the coach pulled me aside. He told me that although I had ‘great technique’ my obvious difficulties seeing the ball meant I would never make the team. As a sport loving and naturally athletic 12yo, I not only knew that the writing was on the wall but that I probably would not be able to read it. You bet I was pissed.

Naturally, I bottled it all up and just got on with things. The contact lenses helped with that – and I soon replaced batting with books and developed a liking for being deliberately (and provocatively) abnormal. Only now can I see and acknowledge that the smart, impervious, highly individual guy I thought I was viewed both self and world through a dark and obscured prism of exile, self-hate and impotent fury.      

Big deal, you might think. Don’t we all to some degree? 

Yes, I imagine so – which is why I don’t regard my blindness experience as being unique or essentially ‘special’. What’s more, my eyesight doesn’t ennoble or render me unworthy. In the end, it’s just a thing I have to work with. More banality, less identity.

Therefore, despite the gathering fog, I choose not to wear the badge or embrace the identity politics of disability. This may change of course, but for now there is no role me as the blind talkin’ guy. For I am not my eyesight. I do not wish it to dominate my story of self; and even though I cannot avoid it, I am not inclined to make it my central focus. (Insert ironic reference to macular hole and loss of central vision.)

Perhaps this is merely a dressed up stubbornness, a fragile male ego clinging desperately to an outdated vision of itself. Maybe there’s a little boy inside me still wailing it’s not fair. I cannot dismiss these possibilities out of hand. The human animal wants to belong, however much the rationalised adult seeks to affirm its individuality – and so the notion of singling oneself out as dis, ab or sub is hard to swallow. We are likewise attracted to ideas of ableness, of being useful, and being blind means we are a weight that others have to carry. Excess baggage. Expendable. Will not make the team.

To be clear, though I am not consciously motivated by any of this I would be foolish and arrogant to pretend that such unconscious drivers are not at work in either my decision making or self-narrative.

Thus, whilst my occipital lobe re-jigs its processing of electro-chemical ‘spikes’ safely hidden from the tribal gaze I am training myself to fumble around in an equally invisible fashion. After all, if I keep my contact lenses in Kelly might not ignore me.

Beyond her smile though, there is the mirror. To so palpably witness your own decline is to confront the tenuous chimera of your own mythology. More than that, mortality. To approach blindness is to enter the foyer of the ultimate darkness.

Alarming though this may sound, I will confess a kind of ecstasy at the prospect of it. To look in the mirror and see nothing is to be absolved. For who can judge what cannot be beheld?

Only the years will tell if I do or do not go blind. In the meantime, my neural networks will get plastic and I will endeavour to minimise concussion incidents and be grateful for every remaining day in the light. Even if you do notice. 

          

1: My flatmate thinks it maybe twice. He was in the room late last year when I smashed my head into a protruding door and seems to think that I was momentarily ‘out’. All I can say for sure is that the dull but insistent headache lasted about 36 hours. Such collisions are, I suspect, more to do with the loss of peripheral rather than central vision. Either way, I’m not exactly looking forward to the next one.

2: I was recently assured by my current optometrist that such a prediction is not one she would make. Indeed, our latest consultation indicated little more than gradual age-related decline. Although my right eye has deteriorated in the last couple of years, the macular hole in my left has, it seems, closed up a little.    

3: While true that people living with disability in this country (Australia) still face barriers and encounter prejudice and abuse, it is equally true that 2021 is, historically speaking, a ‘good’ time to be disabled. Some might take umbrage at this, but I would ask them if they would prefer to have been disabled in 1950 or 1823. I say this not to minimise people’s suffering or to dismiss the hurdles they daily deal with but to acknowledge that governments, institutions and the wider community have moved on significantly from freakshows, shunning and blatant name-calling.

4: There is a big difference between being visibly and not obviously disabled. I can still hide my eye problems. I still pass for normal/able/etc. For those in wheelchairs or who have speech issues and other unmissable signs of difference, there are no contact lens transformations. No pretending. I remain thankful for the invisibility of my circumstance.