Pop 89: At Least You’re Not Seeing Dragons

By Madonna Hamel

My brother Doug is doing his morning word search exercises. He also moves his eyes along a wall chart image of a clock, then zigzags a pencil across a page, connecting letters to numbers. These exercises are supposed to help bring his some sort of stability back to his vision. They are recommended by optometrists who work with people who’ve had brain injuries though they’ve luckily never had one themselves. He looks up and says to me, gripping his pencil: If I could see, there’d be no stopping me.

Ironically, Doug has 20/20 vision, and the clearest blue eyes of anyone I know. It’s just that his brain doesn’t know that. So he has to develop new neural pathways. But please, if you run into him on the road, do not offer advice or explain to him the miracle of neuroplasticity, especially if you are “super” healthy, chirpy young person. “Just trying to help” is a common and understandable side effect of many illnesses and accidents - people feel compelled to relate to the unfortunate sufferer, for the hundredth time, their latest readings or over-hearings or hearsay from a friend of a friend.

We all want to make others feel better, I get that, but I’ve come to see that instinct as part of a deeper need to make US feel better. It’s a garbled and almost cowardly response to our own fear, pain and grief. We want the suffering person to feel better so we can feel better. Or at least, not awkward. It’s kind of like saying: please don’t remind me of my mortality. But we need to be strong enough to listen to THEIR fear and grief and sadness and grief.

My brother’s latest MRI is over a year old. The language describing the results is incomprehensible because, for one thing, it’s on faded fax paper, and another, it’s in Latin. So I did some research. “Encephalomalacia” is a softening of brain tissue. And Cortical necrosis in death of brain cells in the cerebral cortex. All a result of his stroke. Yes, but, what does that MEAN I yell at the piece of blurry paper. And, more important, for someone like my brother - who, before his stroke, was a self-employed carpenter and journeyman and foreman on construction sites - WHAT can I do about it?

Apparently, answering “What can I do?” is not the neurosurgeon’s skillset. Though a nice enough fellow, the man did not seem to feel the need to be reassuring or helpful after his brilliantly executed explanation of what was going on in my brother’s brain according to the latest Catscan. He shrugged and suggested “strategies”. Strategies? I thought, you mean like, compensation for loss? With all the hyped-up aforementioned vaunting of the powers of the brain’s neurons go-for-it-spirit ability to forge new pathways he defaults to strategies? Wow. But, I kept my agitation to myself. Yes, I am a big sister, so I can be forgiven for overextending my vigilante tendencies. But I also know that people recovering from trauma need to feel a sense of personal agency. Still, it wasn’t easy watching my brother’s face go from confusion to bewilderment to blank stare.

The neurosurgeon who handled my brother’s case explained in intricate detail what happened to him and what he was probably seeing and not seeing. My brother could not see me sitting across from him because I was outside of his peripheral vision. And, he told the doc, he has subsequently viewed the world as if through, alternatively, a swirling kaleidoscopic, a snorkelling mask, a movie projector screening events on a bedsheet waving in the wind. The doc’s response? “Hey, at least you’re not seeing dragons! I have a patient who swears he’s being stalked by a dragon!” Doug and I looked at each other and for a split second we were, to our credit, intrigued by the phenomenon and the idea of being followed by a dragon. But after we left the office we stared at each other and mouthed WTF? And then, now what?

Those were the early days of his diagnosis, so he still hadn’t gotten his head around - pun intended - the whole event. And the neurosurgeon, in my estimation, though a crackerjack diagnostician, was sadly lacking in the kind of tenderness one needs when facing the shock of it all. If there was absolutely nothing to be done, I get it. But, almost two years later, amid the swirls and blur and tv static called vision, Doug has begun to make some sense of things. He can draw a clock on a page without writing all over my table. He doesn’t miss the stove when he sets the coffee pot back down. He’s taking a Jungian counselling course where he’s using  all kinds of knowledge and insights gathered over his 62 years. His metaphors are getting richer, more detailed and creative. He reaches into parts of his memory that haven’t been touched by temporal lobe damage and finds associations and connections from a childhood full of fairy tales, from his twenties watching The Hero’s Journey, and reading and writing poetry. The change has been incremental - but it’s real. Even the remote possibility of such change should have been stated and encouraged.

I’ve been looking for stories by other sufferers of strokes and encephalomalacia. Stories of survivors rejoining the land of the living. It is essential to one’s healing to hear stories of people who chose NOT kill themselves because of the extreme existential isolation caused by vision chaos. Instead of “at least you’re not seeing dragons” docs could talk about facing the dragon of despair. Maybe mention the guy who went on to travel the world, fall in love, and buy a house on the beach after being shot in the head. Or the journeyman back at work, even though he had to remortgage his home to pay for various treatments. He never gave up.