3 Ways I Explain My Vision Loss
Post Title: 3 Ways I Explain My Vision Loss.
Just as losing my vision has been a gradual journey, my ability to talk about it has also evolved. In the beginning, I shared the news with my family and my close friends as if my world had fallen apart. You know how it is—shock and the inevitable drama.
When my life didn’t noticeably change because of my diagnosis, I fell into a long period of denial. It was easy to explain away vision snafus with how tired, clumsy or pre-occupied I was. Even not driving made sense as I lived overseas and could get around without a vehicle. No one questioned me.
Decades later when I could no longer hide or explain away my vision mishaps, I looked for another approach. My white cane came to the rescue and no real explanation was necessary. I could silently go on my way—leaving others to their own conclusions.
As my memoirs took off, I found it necessary to speak about my vision loss journey. Naturally, my audience wanted the details.
The first way I explain my vision loss is with the symptoms I experienced and the phases of my eye condition, Retinitis Pigmentosa (night blindness, loss of peripheral vision, tunnel vision and … no vision). I talk about the inconsistency of my vision and the holes I have by giving analogies—how my eyes “play tricks” on me or challenge me to a game of “hide-and-seek” with me when it comes to what I see. Sharing has become easier with time. This is focused speaking, which allows me to include humorous anecdotes to break the heaviness of a “blind” diagnosis.
1 in 4,000 are said to have Retinitis Pigmentosa. Only a percentage of those will become public speakers, drawing awareness to the topic. I’ve adapted the approach to speak one on one—which works for me. What I’ve discovered in sharing my story, the process of doing so brings it down to a level where I can manage it emotionally. I find I am a lot more positive.
The second way I explain my vision loss is through my stories and writing. Given time, I can find words to describe what challenges I have and tell that one-off strange occurrence where I want to run and hide … well, ideally, for the rest of my life! Or at least a couple of days. As I lose my vision, what I can see constantly changes. This leads to an endless series of adapting to my environment in new ways.
It’s a privilege to be able to share my journey in writing and connect with others experiencing the same challenging journey. Also, it allows me to bridge gaps in understanding. Finally, writing about vision loss documents my losses and the ways I’ve found to cope at various stages.
The most awkward situations I encounter are those where I have to explain my vision loss to former relationships when they see me using a white cane for the first time.
I don’t know why I can tell strangers but not people who knew me before I had my white cane. It’s as if both parties feel a sense of shock. Who begins? Should I offer to explain? Is it appropriate for the other person to ask? Should each one pretend my white cane doesn’t exist?
The ‘what happened’ lies between us like a heavy, saturated raincloud. Should we dash through to minimize our exposure? Maybe we can get through it without the cloud bursting and rain soaking us. Maybe not.
A few years ago, I decided to spend the day with my brother to work in some family bonding time. I left the activity up to him.
The glass door was heavy but the steady stream of people following me pushed it open with me in the wake. Naturally, I squeezed through. For a moment, I stood between the entrance and the hall, trying to sort out my bearings. I skootched to one side to wait for my brother, Mike, still parking the car.
“I’m here,” he said, “On your left.”
I could hardly move my cane such was the crowd at the Auto Auction House. For the day, it served as a Gun Raffle extravaganza. I followed Mike, staying focused on his bright red sweatshirt as we passed a series of long tables filled with people.
It reminded me of a Bingo hall. Lightly-clad women—ranging from teens to wise-to-the-world sixties—and some men streamed through the aisles between tables, swapping tickets for cash. The transactions went fast. The ticket sellers circled the room like humming birds lightly landing on honeysuckle blossoms, then taking off again.
The Emcee’s voice over the loudspeaker rattled on and on. I couldn’t catch any of the words. People pressed into my sides, bumping my cane. So many people to have to watch out for. All a blur. So loud. And dark. The room seemed smoky with its dim lighting. Every long table looked identical—like the kind firehalls loan out—and the room had aisles and aisles of them.
My brother was in his element, calling over the ticket sellers and leaving for one reason or another. I had never gone to a gun raffle before. I didn’t have much of the familiar to cling to as I tried to adjust myself in the cacophony and chaos.
I needed a purpose so I challenged myself to bring us back some food.
The food line curled around the gigantic area—twice. I quaked. Could I make it back to my brother and our little section of the table? Would I become lost in the sea of people? I told myself to sit down. But I was bored. I could do this. All I had to do was take my time. I would find my way back through the blur. Why not try?
“Mike, I’m going to get us some food. What do you want?”
He looked up from one of the many tickets he was filling out, surprised. “Do you want me to go with you?”
“No, I can do it.” My voice sounded confident. I was bluffing, halfway hoping he would go with me.
“If you’re sure. I’ll have a couple of hot dogs. Get me a brownie if they have any. Oh, and a Pepsi.”
I picked up my white cane from under the table. “Okay. I’m going. But make sure you don’t take off your sweatshirt and don’t go anywhere.” Or I’ll never find you again.
I wandered through the crazy maze of people. Most seemed occupied but every few feet, someone saw my white cane and pushed me further up in the line. Finally, I had a plate of hotdogs and one sloppy joe, a can of coke and a bottle of water. With the coke under my chin and the bottle of water held under the crook of my arm, I felt I was doing a precarious balancing act.
That’s when he saw me.
“Amy??? How the heck are you doing?” The blurry figure crushed me in a bear hug, white cane and all.
I knew that voice. But from where? I smiled in his general direction. It was someone from my past. Someone who probably wasn’t aware I used a white cane. I braced myself for the encounter.
“Here, let me help you carry that,” he said right away, taking the plate out of my hand and the coke from under my chin.
“Thanks!” I relaxed my shoulders and transferred the bottle of water to my left hand. Then we both stood, awkwardly. “How. Are. You?” I said, needing to fill the silence.
“Great. If I win one of these guns, I’ll be even better. Got my name in for all of ‘em. Where are you sitting?”
“Um … not sure.” I waved vaguely to the right.
“What are you doing at a gun raffle? You’re not a hunter. You were always, ‘Don’t kill Bambi!’ Miss I-love-all-animals. You can’t even stand hooking a fish.”
I laughed. The fish comment revealed his identity. My old boyfriend from twenty-five years ago. He used to tease me mercilessly about how I didn’t have the stomach to hook fish.
“What happened to your eyeballs?”
That was sneaky. Got the question in when my guard was down.
“Oh yeah, you know how it is.”
Yes, I knew my explanation said absolutely nothing. I don’t know why I didn’t offer more. We dated for two years. Even got engaged. Yet I couldn’t tell him how I happened to use a white cane.
“What’s up with the stick?” He jostled my cane hanging limp in my right hand.
“Ah, life. You never know.”
“Well, let’s get you back to your seat,” he said, kindly.
“My brother is wearing a red hoodie. If you remember, he’s a big guy.” So was my fiancé though he hadn’t been back in the day.
Together, we located my brother among the many tables in the room. Maybe God sent him to help me find my way back in the bewildering crowd. Who knows?
The third way of explaining about my vision loss is by saying as little as possible. I’ve never forgotten that conversation. Somehow, I equated meeting old friends under new circumstance as threatening. Maybe it was my newfound identity. I was someone else in their eyes before.
Three years later, the encounter makes me laugh. The way he asked me the question about my ‘eyeballs,’ makes me think of eye-bulbs, which paints a funny picture in my mind. It was quite apt. My eye “bulbs” are losing their light or their ability to absorb – well, that’s how I think of it anyway. And it even makes me think of “flash” bulbs, when the surprise meeting takes place and both parties look at each other in shock. A sudden flash goes off as we see each other in a new light.
It’s silly to avoid the truth. Even a straightforward, brief explanation is better than none. I projected my fears of not being accepted onto him. By chance we met again at the grocery store. At my friend’s prompting, I invited him to my third book launch. He came and bought all three of my books. I now understand the saying, “Sometimes it’s our own fears that hold us back.”
As I gradually accept myself exactly as I am, I’ll be able to choose the right way to respond in person. The hedging and embarrassment is leaving me. There will be less and less of that as I own more of who I am with my unique abilities.
How do you handle disclosing obvious life changes to people in your past?
Please share an example in the Comments below.
You have just read, “3 Ways I Explain Vision Loss” by Amy L. Bovaird. © April 16, 2019. No part of this can be copied or used without express permission from the author.