Stories From the Edge of Blindness

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


July 2017

#4 Mourning

O&M lesson #4, still within the comfort of the Braille Institute;  I am not quite ready to start working outside with Tamar and Zelda, and anyway it is bloody hot here in Los Angeles, so the more time in the a/c, the better.

As usual, the lesson began with Tamar and I having a chat.  I am incredibly grateful for this time she gives me to check in about my feelings and my progress. I told her about my one day of practice (refer to previous post) and my feelings surrounding that day.  She told me that it is important that I give myself a chance to mourn; that if I don’t, the emotional stuff will keep owning the process and I will never get truly down to the practical work that is going to make my life more manageable.  One of the most difficult things about RP is that you mourn over and over again; each time you loose more vision or your vision loss dictates changes in your life.  It isn’t a constant state of mourning, but every time I grieve, the process breaks off pieces of myself that I can never get back.

I have been feeling down for weeks and pushing away the reality of why, telling myself that I have no reason to feel depressed; Tamar helped me get to a place where I can acknowledge the depression and the validity of it.  I am mourning the loss of my life before Zelda, when I could walk in the shadows quietly and tell only those I chose to tell that I am going blind.  I am mourning the vision I have lost over the past year.  I am mourning the loss of my secret and the power I had to keep it.

It may sound crazy that I believed I had a secret; I write this blog and have done for years.  I share my story with whoever wants to read it.  But, I still felt clandestine in my everyday life; I held onto the power of how or when or even if  I revealed my blindness to those who touch my physical world.  Perhaps it was my way of hiding from my own disease or of avoiding having to get down to the bones of the grief.  Now, I give gravity and respect to my feelings and I finally understand how doing so will help me move on with Zelda in hand.

Of course, Tamar and I did more than just chat, but the talk helped me immensely; it is strange how, although I am the one who is blind, she seems to know more about it than I do.

After our talk, we returned to the dreaded stairs.  We worked on the short flight for a while and I definitely got more confident, but the stairs up to my apartment are very different; a lot more of them in a narrower area.  So, Tamar took me into the stairwell.  It was an area of Braille that I had never seen before, so I had no visual frame of reference and no idea what to expect.  I closed my eyes, Tamar pointed me in the right direction and Z and I were off.

We got to the top of the first landing and Tamar instructed me how to use the cane and then also my hands to feel along the wall, around to the right and to the next flight of stairs.  We went up three more flights and then turned around to come back down again.  It was disconcerting and I was nervous, but it gave me a huge sense of accomplishment.  I relied on Z during that exercise more than I ever had, which means I was relying on myself in a whole new way.

At the end of the lesson, I felt better about the stairs and better about my feelings and much more ready to continue this process in exactly the way I need to.  If it means I isolate for a while and put the majority of my effort into this new adventure, then that is what I will do, without apology or excuse.  Because this blind thing, this RP thing, this white cane thing….it is a big deal.

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.


Lesson #3 Entirely with Zelda

I think I was on a bit of a cloud during my first two sessions with Tamar.  I was so proud of myself to have taken such a big step, impressed with her, safe with Joe there at the second lesson and feeling generally positive.  That changed.  By the third lesson, I began to question why I was learning to use the cane at all and feeling incredibly exhausted and overwhelmed by the whole process.  I have an unfortunate tendency to lose hold of the reality of a situation by trying to convince myself that it is all positive, and then,  everything that is difficult or challenging about whatever I am trying to do comes crashing around me. I have often just given up.  This time, I am not giving up; I can’t.

I sat in the lobby of the Braille Institute with Tamar for a while on Monday, wondering what I was doing there; why do I need to learn to use the cane when I can see my teacher showing me how to use it.  But, of course I know why I need to learn; it’s because RP is a total mind fuck.  I see and I don’t see; I have no idea what I don’t see, but what I see fools me into thinking I am seeing more than I actually see.  Do you see?  Total Mind Fuck!!!!!!!!

I watched all the people who had canes and couldn’t see me watching them and I felt like a fraud.  This is what RP does and it is really dangerous.  I am blind and I do need help and I do need the cane; the sooner I can embrace all of that fully, the sooner I will be able to relax and really let Zelda be a constant companion. I was also nervous because I knew that lesson #3 was going to be entirely with the cane.

I felt better after talking things out with Tamar; a little more justified, a bit calmer and also grateful that I have resources like the Braille Institute.  It was time for Zelda to come out of hiding.  First, we went into a quieter part of the BI where there is a long hallway and I walked up and down the hallway, using Zelda for safe passage.  I learned about more methodical scanning techniques and about different ways to actually use Zelda.  I can sweep her back and forth, or tap her from side to side or simply hold her in my left hand, when I am not using her, and allow her to glide in front of me.  I am having a tough time getting the 2 to 10 sweep and always end up too far to one side or the other, but I have the footwork down pretty well.  The thing is, if I am not maneuvering the cane in front of me in the proper way, I am at risk of missing a lot of what is in front of me, or unintentionally assaulting strangers.  I am going to have to practice at home.  I suck at homework.

We must have been in the hallway for close to an hour and then it was time for the stairs.  I wasn’t blindfolded for the stairs, but I did have to keep my eyes closed while I was practicing the steps Tamar taught me.  I won’t give you a detailed list of her instructions, but just know that there are a lot of them and I am not sure I even remember them all.  I was anxious and scared and wanting to be a good student.

Going up the stairs isn’t too bad; it does take some practice and there are specific ways to do it safely, but I didn’t feel particularly afraid doing it; just a bit bumbling at times.  Going down the stairs is a whole other thing.  It is super scary.  Have you ever had one of those dreams where you are falling and as you begin to plummet you wake up and your stomach drops?  That is what it feels like the first time you find the top step with your cane.  The lead up is like the steep climb of a roller coaster, except you have no idea when the drop is coming. The first time I found the step, I started just a few feet from the stairs, but it still took my breath away when Zelda dropped down into nothingness.  Then Tamar asked me to find the stairs from farther and farther away; this didn’t alleviate the anxiety, just prolonged it.  At one point, she led me around to disorient me, so I would have no idea how far from the stairs I was, and then pointed me in the right direction.  I learned that I have an annoying tendency to veer to the right as I am walking because I  apparently swing the cane too far to the right.  So much for being a graceful dance partner for Z.

We worked on the stairs for over an hour and I don’t think I relaxed for one minute.  I was stiff and exhausted and I couldn’t imagine how I would get through three months of this.  I can’t explain why, but for some reason, during this third lesson, the shit got real; maybe because it was finally a lesson entirely with the cane or because I experienced a new kind of fear around my blindness.  All I can say is that this whole blind thing is really hard; it isn’t impossible and I know during my lessons there will be ups and downs (literally), but it is a typhoon of emotions and experiences that I have no choice but to meet head on.  I am sure, however, that I will do it in my classic stubborn way.  I keep forgetting to take Z with me when I go out and I haven’t used her once since the lesson on Monday.  Perhaps this is my rebel week.  I will have to come clean with Tamar next Monday.

Taking Zelda for a Spin

I have been hesitant to illicit the help of Zelda outside the Braille Institute, but Tamar pointed out to me the importance of utilizing the cane at least at street crossings, to let people know that I may not see them.  Makes sense, but I still felt anxious about taking her out.

I had plans to visit my Dad, across town, and was taking the bus, so I thought about using Zelda at the street crossing at Sunset and Gardner; I sat at my desk before leaving the apartment and took her out of my bag and unfurled her and practiced a bit in the house, and paced and agonized and put her back in my bag. I couldn’t do it.  I was feeling nervous about being exposed in my neighborhood, about my friends and neighbors treating me differently or forgetting who I was before they knew I was blind.  I think I am a pretty friendly person, but I prefer to stay in the shadows, away from spot lights and prying eyes.

I have thought a lot about whether my feelings around my blindness and the white cane come from a place of shame, and I really don’t think they do.  I sometimes feel as if my RP makes me less than whole, damaged and broken, but I am not ashamed of it.  I have a disease; it has no cure and no apparent origin and I am not responsible for its inception.  It just is. I definitely feel shame about other aspects of my life and myself, things that are in my control, but I think with the blindness, what I truly dread is the attention it will attract once the cane becomes a more present part of my everyday outside life.

I left that day for my Dad’s, just like every other day, cautious walking down the street and crossing Sunset to the bus stop, but kept Zelda tucked away safely in my bag.   During the ride across town,  I thought about taking Z out when I got to Westwood and using her in the street crossing there, but still I kept her hidden.  I got onto the second bus, the one that takes me within a mile of my Dad’s house, still contemplating taking Zelda out.  Half a block from my stop, I took her out and held her tightly in my hand.  I got off the bus and made my way down a short street to the wide and busy street crossing that would take me into my Dad’s neighborhood.  With my heart pounding, I released Zelda from her constraints, her sections popping into place like puzzle pieces, and waited for the light to change.

When the light turned green, I looked to my left to make sure the car in the turn lane saw me and I felt that the usual urgency I get from drivers, impatience to turn, wasn’t there.  It was as if the cane gave the driver pause and therefore gave me a safer crossing.  I stepped out into the busy street, sweeping Z in a 10 to 2 arc, practicing the footsteps Tamar taught me, and made my way across the intersection.  Even writing about it brings the tears welling up in my eyes; I felt like I had crossed a threshold that I have been turning away from for years.  I felt proud of myself and terrified and grateful and also like I wanted to shrink away and hide.  But, I didn’t hide.

I kept Z out and crossed another intersection.  I could have gone left, up a side-walk where there were no other pedestrians, or right where I saw at least five people chatting and smoking outside a local business.  I chose to go right and I held my path.  I remembered the advise from my friend, fellow RPer and Blogger,  and I just kept moving slowly forward, not attempting to move out of the way of the people ahead.  I came toward them and they gave a quick stare, then cleared the way for me.  I felt like bloody Moses; I told Joe later that perhaps that is what I should have named my cane.

The next person I saw was a young woman walking two dogs.  She noticed me coming down the sidewalk and got a bit of a panicked look in her eyes.  Her dogs were busy sniffing the trees, as dogs do, and I think she wanted to stay ahead of the  poor blind lady, so she picked up her smaller dog and moved at a faster pace down the sidewalk.  She turned around 3 times to look at me, but I didn’t feel disdain from her, just curiosity.  She raced off and I continued at my slow pace down the sidewalk.

I got the last street crossing before my Dad’s street; this is actually a street crossing that makes me a bit more nervous than others, because it is wide and there are no stoplights.  I came to it with my usual trepidation, but was curious if having Z with me would make me feel more secure.  I don’t know if security or confidence were present in my heart just then, but I did feel less timid and crossed the street in a much less rushed way.  I sensed the drivers staring at me from inside their cars, but I just kept walking, concentrating on the steps Tamar taught me.  I just kept dancing the dance.

I walked down one more short stretch of sidewalk and then put Zelda back in my bag, feeling pretty good about our first real walk together.


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