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Is Improvement Always Good?

Improvement is change, and change after brain injury shatters and exhausts.

Shireen Anne Jeejeebhoy
Source: Shireen Anne Jeejeebhoy

I lay on my front on the massage bed, acupuncture needles in my back, not daring to move. I occupied myself by staring at the floor through the hole in the head support, first with my good eye then with my scarred eye. For almost my entire life, I’d seen only colours and shapes with the latter. That day I saw the flooring beyond mere colour.

If I hadn’t been so afraid of the needles, I’d have shot up in shock.

Was that for real?

After that, I began to identify what I was looking at with my bad eye alone. I began to experience peripheral vision. I’d never seen things on that side before.

A friend exclaimed in wonderment over this change. He thought I’d be ecstatic.

I wasn’t.

I was already dealing with the life-altering catastrophe brain injury had brought. Improvement in my vision was yet another identity change. The way I’d been treated, the way I saw all my life, those ways were familiar. Ingrained. This change not only affected how I saw the world, it also became part of the reason blurriness dogged me every day until I had eye surgery 16 years later. I didn’t need blurry vision. I didn’t need another identity change on top of the personality changes brain injury had wrought. I wrestled with, “Who am I?” if I can now see optical illusions, see peripherally on both sides, don’t bump into things on my no-longer-blind side.

Worse, returning vision, seemingly spontaneously, is not anywhere in the ophthalmology canon. So much so that my ophthalmologist at the time disbelieved me — as if I didn’t know my own vision having lived with it for decades! — and the one who referred me to surgery didn’t really think I’d undergo a profound improvement as a result. I did. I’m still having to relearn how to navigate new spaces. (The pandemic has stopped my practice sessions. A relief in a way because it’s hard work relearning to see and perceive.)

Over the years, I gradually adjusted to one change; then another change happened, and I'd have to adjust all over again. With time and, probably more so, brain biofeedback, I became used to some peripheral vision and being aware of things on my hitherto blind side. I adjusted to the increasing light levels in my bad eye. I adjusted to being able to see more and more details with just that eye. The vision didn’t become 20/20. It still looks like a picture with many, many pixels missing because of all the scarring and no central vision; I couldn't make my way in the world with only that eye. I cannot read with it. But to be able to identify the top letter on the eye chart with that eye — which happened just before my surgery — astounds me, still. And to be able to see panoramically, see nuances of colour and detail, have sharper vision because my bad eye in an instant began working with my good eye after surgery, remains a miracle to me. Yet I became so debilitated by the improvement that health care professionals asked me if I regretted the surgery. You see, a huge, sudden improvement in vision requires the brain to relearn how to see and perceive. As hard as the series of changes were, this big sudden one cost me my independence for a long time.

I underwent a similar adjustment period with reading after brain injury stole it from me. I’m not talking about the life-rocking change for the worse, but improvement years and years later. Unlike with my vision, this difficulty with improvement happened because brain injury rehab didn’t restore my reading.

Specialists didn’t respect my need to read enough to make an effort to find and use effective techniques to restore my reading comprehension.

As a result, I became afraid to read. Not remembering, not being able to build up a big picture, not absorbing opening sentences, experiencing nap-inducing fatigue after maybe 5 minutes of reading (building up to 20 minutes before needing a nap), created dread and fear that warred with my grief and desperation to recover my identity as a lifelong reader.

I became as if I’d been a non-reader who’d hated reading since childhood. The only difference was that reading for me is essential to writing. And reading physiologically reduced my stress levels, even with my dread and fear. Those differences helped me cope with my fear of reading and the exhausting reading rehab I finally found that gave me back my reading comprehension. Those differences keep me practicing, even during periods of regression. Without them and without the caring guidance of the professionals who taught me to read again, I would have given up.

Improvement in my reading from what had become my norm as a non-reader required accelerated adjustment to profound change. It’s physically, emotionally, cognitively, and identity-recreating shattering. Just like profound change for the worse is.

Standard medical treatment of brain injury — and even reduced expectations in clinicians who use neurostimulation therapies — failed me by allowing my reading-damaged change to last long enough to become the norm, to become familiar, to make improvement the profound change I had to adjust to instead of being a return to the norm for me.

Standard medical treatment of brain injury must become immediate and effective in order to avoid improvement becoming a decades-long reality of continual adjustments that exhaust or becoming one more identity change instead of a return to the norm. By allowing brain injury to fester, brain injury specialists create a new diminished norm in a person; thus they create resistance to improvement, for improvement is a change that’s excruciating and strenuous.

Copyright ©2020 Shireen Anne Jeejeebhoy. May not be reprinted or reposted without permission.

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