Stories From the Edge of Blindness

In 2002, Retinitis Pigmentosa changed my life. This is my story of a slow approach to darkness.


low vison

Cracks in the Pavement

During the past two days, I have been to the grocery store twice.  Both visits had me feeling anxious and unsure of my surroundings and footing.  I had Zelda in my bag, but I didn’t take her out; feel free to call me a dumb ass.  I did think about taking her out both times, but instead of using this tool which is at my disposal to help me feel more secure and confident, I chose to walk around the store having who knows how many near collisions and feeling totally tensed up the entire time.

Yesterday, Joe was with me, so I had him to lean on if I needed to, but today I was alone and the choice to leave Z stashed in my purse was screaming at me in a different way.  Somehow, knowing that I now actually have something at my disposal which would make my trips to the grocery store easier, makes me feel my discomfort more keenly.  I knew that there was a way for me to alleviate my anxiety and what it feels like when that anxiety actually lifts; this led me to make a different choice on the way home.

I took Z out and unfolded her just outside of the grocery store, then proceeded through the parking lot and down the sidewalk toward my favorite ramen shop.  I wish I had some thrilling thing I could write about, but the walk was pretty uneventful; Z helped me over some cracks in the pavement, I passed a few people walking, and the cars at street crossings were definitely more patient than when I am sans cane, but no spills or bruises or confrontations.

When I got to the Ramen shop, I realized that it was their break hour, but the owner came out and invited me in to place my take out order early.  I folded up Zelda and went inside and he didn’t even look twice at her.  I felt like I broke through some serious ice. Zelda has seen the dirty streets of Hollywood and I am out of excuses.

A Cane in the Hand

On the bus ride across town from my Dad’s house to my apartment, I took Zelda out on the bus and kept her in my lap as I listened to a history podcast.  As people got on the bus, I watched them look over at the available seats next to me, notice my cane and then head away toward the back of the bus.  I didn’t feel like I was being rejected or ridiculed, more like being given space.  I think when the seats reserved for elderly and disabled people are actually occupied by the elderly and disabled , other people tend to remember what the seats are actually for. Or, maybe my tattoos make me look intimidating and that is why people steer clear.  Flowers and butterflies can be super scary.  I am fine with it either way.

About half way home, I decided to keep Z with me when I got off the bus, rather than stowing  her away in my backpack.  It would be the first time I walked through my own neighborhood with my cane actually in my hand.  I kept her folded up and just held her, but even folded up, a white cane is pretty visible.  I got off the bus on Sunset and didn’t see anyone I knew in that first half block before turning down my street. I was aware of feeling more attuned to noises around me, more on edge, as if waiting for someone to say something.  No one did.

I turned right onto my street and didn’t see anyone out walking besides me; it was a particularly hot day.  Then, I came to an alley and saw my neighbor Bernardo walking toward me with his dog Stormy.  He got an immediate look of surprise on his face and asked me what I was doing with the cane.  I explained a bit about RP and pretty nonchalantly told him that it was all ok, just time to start learning how to use the cane. Most often, I feel like it is my responsibility to help other people feel more comfortable with my blindness. It is partially to make them feel better and partially to avoid too much attention around  the whole what is RP and how sad for you thing.  Bernardo was a good person to run into during my first Hollywood trial run with Zelda.  He listened attentively to my brief explanation, was appropriately sympathetic to my plight, and then we started talking about his family and the dogs and my family; just regular stuff.  The whole conversation ended up being more about him than about me or the cane, and that was exactly what I needed.

I feel as if I am on the slowest course imaginable when it comes to Zelda.  People may be thinking, just take the fucking cane out already and walk down the street and who gives a crap what people think; but, it isn’t that simple.  It isn’t that I am concerned with ridicule or that I care what people think of me; it is more that I am scared of being seen differently by people who know me but don’t know about my RP.  I am afraid that I will cease to be the woman they thought they knew and become the blind woman with the big white cane.  I am afraid that I will be lost to Zelda or that who I am will be usurped by her presence in my life.  So, my steps down this road are slow and small, but I am taking them and I am allowing myself to feel proud of each one.


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