It’s been nearly fifteen years since I sustained a traumatic brain injury, and though you would think my brain should have fully healed by now, that’s not the case. In reality, the healing process for most brain injuries is ongoing, a lifetime of ongoing. I’ve submitted to all kinds of therapies over the years – cognitive therapy, herbal therapy, meditation, yoga, medications, e-stim, the list goes on. Now, in my efforts toward continued healing, I am a believer in  vision therapy.

Fifteen years ago, even as recent as three years ago, if someone had mentioned vision therapy to me as a possible treatment for my sensitivity to bright lights, as a solution to the dizzying fatigue I experience when in the grocery store, a shopping mall, at a July 4^thcelebration with dozens of fireworks lighting the night sky in frenzied colors, I would said, “What? Why vision therapy? And what the heck do you mean by vision therapy anyway?” Though knew of certain kinds of therapies for vision difficulties, like a lazy eye (I had to wear an eye-patch when I was a kid to correct my right eye that wandered like a toddler first learning to walk), I had never heard of vision therapy as a treatment option for TBI-related vision difficulties (FYI: not  only injuries caused by external trauma, but also injuries that are acquired, like a stroke or a tumor, can affect visual processing.)

We typically think of vision as what we see, but, dare I use a cliché, there’s more to vision than meets the eye. Vision also includes how the brain processes what we see. So, though I have 20/20 vision (when wearing my glasses), my brain struggles with interpreting images sent from the retina.

I’ve known for a long time now that something is wrong with my brain’s ability to process visual information, but because I’ve become used to melting into a puddle of confusion every time I walk down the cereal isle, with its endless options of whole-wheat, sugar free, and non-GMO, I’ve forgotten what it’s like to feel balanced and solid on two feet. (Thank God my husband loves to shop, sparing my brain the energy depletion of just walking into a store.)

Sometimes my brain signal’s my eye to read words on the page as a blurred mess, or my mind’s eye misconstrues words. When out for a walk, I sometimes see things coming at me from my right or left, like a flying rock, or a rogue tree branch, or an angry bird, when in fact none of those things are there at all. Not too long ago, my brain interpreted a fire hydrant as a dog. (No, I’m not on drugs, not the kind you might think I’m on anyway.)

Finally, just this past month, I decided it was about time I see an optometrist for a visual processing assessment. Honestly, the hour-and-a-half of testing was more like eye gymnastics. Here’s just a fraction of what that workout involved:

A kinetic field test in which I looked through a viewfinder with one eye closed. With that same eye fixed on a center point, the examiner shifted a pointer with a white tip beyond my visual field. Each time the pointer returned, I let her know that I could see it. I did this several times, each time the tip of the pointer a different color. Then I followed the same process with the opposite eye.

After that, I spent more than an hour with the optometrist. She first asked me to read various lines of letters on an eye chart. Then, as I looked through a viewfinder, she flickered a foggy, whitish light onto a chart that made it appear as if the letter U was floating all over the place, and asked me if I could see double. Yes, I did, but only once. Other than that, my eyes had trouble keeping up with the U. Then she had me close my eyes, and while she jingled a set of keys, I tried to touch them with one finger. I can’t explain exactly what the test reveals, but since the auditory and visual neuro-pathways run close together, if you’re struggling with visual processing it makes sense that you might also have difficulties with auditory stimuli, as in hyper-sensitivity to certain sounds. (The sound of crinkling plastic bags drives me crazy.)

Then, while looking through the viewfinder, the optometrist slipped in and out of the machine various shades of lenses, and asked which ones made my vision blurry, versus ones that made me see with clarity. A strange thing happened at one point. As she slipped in one of the lenses (one with a blue tint), I felt my stomach relax, a letting go of something – anxiety, stress. When I told her what had happened, she nodded, explaining that some people experience a visceral relaxation. I couldn’t believe it. I wanted more blue, more of letting go. That’s when she said I would benefit from therapeutic glasses with blue-tinted lenses. They’re nothing like every-day prescription glasses; they’re designed as a treatment for visual processing issues. At first, you wear them for only a few hours a day, slowly increasing the amount of hours over time. I’m still waiting for my new glasses to arrive in the mail.

Meanwhile, in an effort to recruit new brain/vision-related neuro-pathways, I’m following the optometrist’s instructions and practicing in-home eye-tracking gymnastics five days a week. While the exercises are yet one more thing on my brain-health to-do list, they’re worth it. After all, it would be nice to go for a walk without worrying about getting bit by a firehydrant.

At the Vermont Brain Injury Conference last fall, a TBI survivor, who sustained his injury years ago, spoke to an audience of nearly four hundred people. He didn’t have any visible scars, difficulty with speech, or an obvious limp to his gait. He spoke clearly and eloquently, and, in fact, was back in school pursuing a college degree. Because he appears healthy and strong, he explained how those without a TBI often don’t know what to say to him when they learn that he sustained a TBI. I recall him saying to the audience something like, “I’m me.” In other words, he was affirming his TBI, not from the perspective of a victim, but from the perspective of an individual who has accepted his disability, who has learned to cope with the challenges he faces each day, and who wants others to know that, though he looks “normal,” he cannot do everything others can do.

He left me thinking, thinking a lot, about how confusing a TBI is for those who do not have one, especially if they cannot see or hear it – the scars, the limp, the slowed speech. We all mean well (or I like to think so), and when we meet someone with a TBI, or any kind of disability, it’s natural to want to offer an opinion or suggestion, even if it’s unsolicited. I’ve done it myself, and I have a TBI. A few months ago, when walking on the treadmill in the gym where I live, a middle-aged woman with a cane shuffled in, one foot dragging along the carpet. The arm on the same side of the dragging foot hung limp. Her speech was slurred when she said hello. I assumed she had had a stroke. I smiled at her and introduced myself. I watched her struggle to lift herself up onto the seat of the stationary bike, and suggested that she might want to try the recumbent bike. She responded with a soft voice, saying that she had trouble adjusting the seat of the recumbent bike. I offered to help her, but she said she could manage herself. “Are you sure?” I asked. “Yeah, I’ll figure it out.” She did. Though I was being helpful, I wasn’t. She needed to figure out, on her own, how to adjust the seat. If she needed my help, she would have asked me.

While we may mean well when interacting with someone who has an invisible TBI, or any invisible disability, there are an untold number of statements we may find ourselves saying (some of them people have said to me), that are not helpful, but hurtful. It can be said that such statements are not only meant as an attempt to be helpful, but also as a diversion from facing our own morbidity, and mortality. For instance, it’s easier to say to someone with a TBI, “But you look great,” than to say nothing at all, which would leave too much space in your mind for thoughts of your own vulnerability.

To learn what not to say to people with a TBI, go to Brainline. This same site offers other communication strategies when interacting with TBI survivors, including those with post-traumatic stress disorder. But please know that by sharing this list, my intention is not to be prescriptive or didactic. Dare I say it … it’s my way of making a suggestion. (Maybe I’m not being very helpful, but I can only hope so.)

Thanks for considering these tips!