Stories From the Edge of Blindness

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


Vision Loss

#5 Playing With Toy Cars

My 5th lesson with Tamar wasn’t a long one and it didn’t involve using Zelda, but I did get to play with toy cars.

I got there a little bit late.  It was an early lesson and I knew I would need coffee in order to function, so I suggested to Joe that we visit the drive through at McDonalds, across the street from the Braille Institute.  I don’t normally do McDonalds, but I was desperate for some caffeine.  I ordered a latte’ and it was apparently a special order because we were asked to drive to a reserved area and wait for someone to bring the latte’ to us.  I was already running late and the latte’ put me back a further ten minutes, but it was pretty good and Tamar didn’t seem to bothered; I had texted her to let her know that the need for coffee had won out over timeliness.

I unfolded Z outside the BI and went inside to wait for Tamar in the lobby; I think people are starting to recognize me because they are even friendlier than when I fist went to Braille, and I am no longer required to wear a visitor sticker.  I am one of the regulars now.

Tamar met me in the lobby with a large piece of painted cardboard and some zippered pouches; she said that it was time to learn how to safely approach and maneuver street crossings.  Then we went into the cafeteria.  No, there are not any street crossings in the cafeteria, but Tamar had come equipped with a miniature model of a  street and plenty of toy cars.

I could give you the play by play of what she taught me, but let me just give you the key terms: Near Side Parallel, Far Side Parallel, Near Side Perpendicular, Far Side Perpendicular and Buddy Car.  I am now armed with these terms at every cross walk I encounter.

I stop at the light and even if I still have time to cross, I wait until the next light because this gives me the chance to get a handle on what the cars in all 4 positions are doing, and locate my buddy car, which is the car in the Near Side Parallel position. Tamar suggested that while I am learning, I pay attention to the cars rather than relying on the walk signals.

The light turns green, I listen for the surge of engines of the cars driving parallel to the cross walk and the car to my left that could potentially be turning right.  Once I see the car in the lane parallel to the crosswalk start to move and make sure there are no right turners to my left, I know it is safe to cross.  If this sounds confusing, it totally is.  It is learning to cross the street all over again; just more safely and efficiently.

I find myself thinking about car positions now, not only when I am at a cross walk, but when I am walking down the sidewalk or in the car with Joe. There is so much to remember and so many steps in ensuring that I am doing things in the safest possible way for myself and others.  I look forward to the time when it is all just second nature.

Ode to RP

Wildflower Muse  published my poem, Ode to RP, last year.  WM is a beautiful online magazine and I am proud to have had my work published there.

I am reposting this because I feel like it is still and will always be relevant in my RP story.

My next O&M lesson is on Wednesday………

Eyes on Fire

At the end of my last post, I left you in the hallway after leaving ERG hell, and my eyes were useless……

The light in the hallway was incredibly bright, an assault on my dilated pupils, but all I saw was brightness through a haze. I put on my sunglasses and my hat, but the light was still unbearable.  I knew I was going to have to use Zelda to help me find my way up to the lobby and outside to meet Joe.  I didn’t hesitate; I unfurled her, got into position (holding her grip in handshake position, right arm extended out at the middle of my body), swept Z out to the left and took a step with my right foot.  I felt confident and walked down the deserted hallway at a pretty good pace. I had a visual reference from when I had come down to the basement for the test, so that made it easier to get back to the elevator.  All I could see was white, like I was in one of those asylum rooms that are in the movies to emphasize the crazy in a person or a scene.  I felt so grateful to have Zelda with me at that moment.

Every time I use the cane, I feel more confident and become more familiar with her nuances.  I can now actually imagine how it will feel when she is an extension of me rather than a marker of my disease.  I feel myself easing into a rhythm with Zelda.  We made it up to the lobby and out the front doors to wait for Joe in a shady spot.

Even from the shade,the sun was more painful to my eyes than the light in the building, so I kept my eyes closed, leaning on Zelda for support.  Joe had parked the car in a lot 6 winding blocks from Jules Stein Eye Institute and we were going to walk back to the car together.  When I opened my eyes to take a peek and see if Joe was coming, I saw him walking up the ramp.  I couldn’t help but wonder if it made him sad to see me there with Zelda, but he actually seemed proud of me.

The walk to the car went well.  I had Joe guiding me expertly on the left and Zelda in my right hand, so I was well covered.  My eyes had begun to sting pretty severely, so I kept them closed for most of the walk, thinking it was the sun that was causing the burning.  It was the first time I felt somewhat relaxed being out with Zelda .  Of course Joe was with me and he always gives me confidence and a sense of safety, but I was still really happy with the way I felt and the flow that I had with Z.  I felt progress and that felt good.

By the time I got into the car, the burning in my eyes was almost unbearable and I discovered that it was actually worse when they were closed.  So, I opened my eyes, but hunkered down under the huge brim of my hat to protect my still dilated pupils from the sun.  There was no relief and rubbing my eyes only made the burning worse; but I was compelled to rub them to try to force the burn out. Nothing helped and I started to panic.  It was a very long 40 minute ride home.

When we finally arrived at our apartment, I rinsed my eyes with an eye bath solution, but this only provided relief for about two minutes.  I tried to rinse with cold water, but that intensified the burn.  I was exhausted and just wanted to go to sleep, but closing my eyes was not an option.  I paced around my house and bathed my eyes every ten minutes, but the burning continued.  Then, I started to feel a sandpapery dryness under the burning.  I was freaking out.  The ERG was torture enough and now it appeared that it would continue for hours.  It did.  My eyes didn’t start to feel better until about 10 pm that night, 7 hours after the ERG.

When I woke up the next morning, there was a weird crust all around my eyes, but the burning had stopped and my pupils had gone back to normal (RP normal anyway).  I really hope I get at least another ten years before having to enter ERG hell again.


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.

Mobility Training – Day 1- Down on my Knees

After 6 months on the waiting list, I have finally begun mobility training at the Braille Institute. Although the waiting period gave me time to absorb some of the gravity of my decision to do O&M,  my emotions are running amok. I feel proud of myself for taking this step, terrified of what’s to come and what this step means, and I also feel like a huge freak.  I know I’m not supposed to say that; I’m supposed to be all positive and triumphant and say that blindness won’t get me down, but that is bullshit. The truth is all of it, every emotion no matter how un-PC it might be.   I feel like having the cane is going to put a big freaky spotlight on me and how different I am.  I am also excited about being able to walk down the street with a new confidence, not having to look down at the ground the whole time.  And, I am scared of the fact that having the cane takes my own reality of my blindness to a new level.  But, here I go, into this new phase of my RP journey, with all the dirty, gritty and gorgeous emotions in tow.

My first session with Tamar, the Rockstar O&M teacher, was at 8:30 in the morning and I was half awake, without a drop of caffeine in my system, when I walked into Braille to meet her.  Tamar is amazing; I felt instantly comfortable with her and cared for by her and I knew that I was in the right hands.

She gave me a tour of the BI, much more extensive than the one Jane gave me on my first visit.  She showed me all the classrooms that include music rooms with pianos and orientation classrooms with full scale kitchens and bedrooms.  She took me into the garden and through suites of offices and learning centers for all the cool tech that exists for blind people and a department just for those of us with low vision. The place is a veritable city for the blind and I knew that day it would also become a sort of safe haven for me.

As we walked around the institute and all it’s buildings, Tamar had me stop periodically and listen to sounds or take pause to notice changes in the flooring.  She pointed out the shapes of signs (all tactile and raised) so I could identify them without using my eyes.  I discovered landmarks placed intentionally to orient people, such as wind chimes at the entrance to the garden.  It all seemed so obvious as she pointed it out, but I also realized how much people rely on their sight, treating the experiences of their other senses as almost inconsequential.  As a partially sighted person, I thought I was utilizing my other senses pretty well, but I learned that I am missing more than I knew.

After the tour, Tamar took me back to her office to talk about my vision and the goals that I have for the O&M training.  I told her about my high levels of anxiety in crowds, new environments, and of course in the dark and the bright sun.  I expressed concern about not being able to use the cane because of being woefully uncoordinated and an eagerness to become more confident with the cane and as a result more confident out in the general world.  She told me about even more services that are available to me and showed me amazing apps on the phone; with all the tech available right now, this is a good time to be blind.

I knew it was probably time to stop chatting, but Tamar was great and started me off slow.  She first taught me how to look for things on counters and table tops that I can’t see because of lighting or color or an object simply being out of my limited field of vision.  I sweep one hand over the surface of the table in one direction and move up slowly, always in the same direction and eventually, whatever is lost will be found.  Then it was time to stand up.

I got up from the chair and first, she showed me some safety postures to safeguard my face and body from collision with furniture, walls, people etc.  I can’t tell you how many times I have bent over to pick something up and smashed my head into the corner of a desk, or walked through a doorway too quickly and ended up with bruised arms and hands.  It is such a simple thing to block your face with your forearm stretched to the opposite ear, but it isn’t something I had ever thought about.  Tamar recommended that I adopt this posture every time I bend down to get something; my face is already thanking her.  She asked me to to walk across  and around the room with my eyes closed, adopting the posture of protecting my face with my bent right arm and my tummy and legs with my outstretched left.  I moved slowly and avoided collisions with walls and tables and chairs.  I was scared, but also already feeling more confident.

After wandering the room for a while, she wanted me to work on using both hearing and touch to find things that have fallen on the floor.  I stood across the room from her, my eyes closed, and she threw her keys on the floor near me.  She then asked me to point to where I heard them fall and asked if they were right in front of me or further away.  Then, she asked me to walk in the direction of where I heard the keys drop and bend down (arm protecting face of course) to find the keys using a particular method.  I began in the center of an arc where I believed I heard the keys drop and moved my right hand to the right in a circular motion, making bigger circles as I progressed.  Then I did the same with the left.  I felt lost very quickly and told her I couldn’t do it, but she told me not to give up and that when you think you can’t find something, it is usually just another step or sweep of the hand away.  She was right, of course.  I realized that this whole experience is going to teach me to combat a lifelong problem; I have always given up too easily and too soon.

After a few more attempts at finding dropped keys, Tamar talked about the appropriate methods involved in being a good guide person.  Obviously, I will never be the guide person, but knowing the right ways to do it will help me help other people who try to help me.  I am right handed, so the proper position for me is on the right of my guide person with my left hand on their right elbow, walking a few steps behind them.  She taught me about the importance of verbal and physical signals; for example, when coming to a narrowed passage, the guide moves their hand toward their back in a way that I can then grab their wrist and we can walk pretty much single file with me still being guided; and, please blind people stay at arms length as to not step on your guides heels.  This was all happening in the safety of her office, but I knew that was temporary.  It was time for me to be blindfolded and, with Tamar as my seeing eye person, tour the Braille Institute without the use of my remaining vision.

My first obstacle (or test) was at the door.  Although an exemplary guide will tell you if the door opens to the right or left, Tamar asked me to feel which way the door was opening by paying attention to her body movements and the sounds of the door.  This sounds easier than it is.  The idea is that I learn to gage in which direction the door opens and then take the door from my guide as we walk through the doorway, making sure to tell my guide that I have the door.  We made it through the first door pretty easily and ventured out into the hall.

Tamar guided me over a carpeted floor and asked me to tell her when the flooring changed.  It felt like a ride when we walked down a small hill in the corridor and ended up on tiled floor.  She asked me to stop and listen and tell her where we were.  I heard someone playing the flute (beautifully by the way) and I heard traffic to my right, so I knew we were by the music rooms on the Vermont side of the building.  She led me to doors and asked me to feel the shapes of the designs on them; round signs indicate women’s bathrooms and triangular signs indicate mens bathrooms (at least I hope I am remembering that correctly).  I had to feel the letters and numbers on classroom doors and tell her what they were.  She taught me to glide just the back of my pinky finger across the wall next to me in order to gage when doors appeared or hallways ended.  My senses were alive in a whole new way and I was actually having fun; but of course I was with Tamar (the expert) and in the Braille Institute where everyone is either blind or familiar with the world of blind people.

We continued along the hallway, my hand on Tamar’s elbow and then the carpet changed to what felt like a rubber mat.  I learned that, at the BI, this means that you are approaching automatic doors that will take you outside. The doors opened and I felt a lovely breeze on my face.  I heard the wind chimes and knew we were near the garden.  Tamar then led me in and out of a set of doors in order to practice my newly acquired skill of paying attention to the direction in which the door opens and making sure that I let my guide know when I have hold of the door.  I think I got the door direction right all but twice.  Not too bad for a first day.

We finished the in and out of the door thing and Tamar led me back inside, asking me what I was hearing.  I heard the hum of some sort of machine, perhaps a vending machine, and knew we were in the cafeteria.  Then it was time for stairs; my heart leapt a little.  She told me that a good guide will let you know when you are approaching a set of stairs and stop in front of them to give you a moment to find the bottom step with your foot and the handrail on your right (if there is one).  Following procedure, we made it up the stairs and back down again swimmingly. I learned that the hand rails in public buildings are installed according to the criteria of the ADA; when you get to the last step, the railing straightens out to let you know there are no more steps.  It was something I had never paid attention to before this first O&M lesson. Tamar also gave me the tip to pay attention to your guides body language and placement, because not every guide is a good guide who will tell you when you are at the stairs.  So, we practiced on the stairs a few more times, with Tamar as her true rockstar guide self and a few times trying to be a less then good guide.  As strange as it sounds, the stairs ended up being kind of thrilling.

After the stairs, we headed across the lobby; I knew we were in the lobby because all of a sudden the noise level increased and I could tell we were in a heavily populated area if the BI.  We were almost at the Braille shop.  It was finally time for me to get my cane.

When we got to the shop,  I was at another emotional precipice.  I was terrified that if I went through with it, if I actually bought the cane, the whole fucking blind thing would get real in a whole other new way, again.  I was also excited because Tamar had made the session fun and helped me feel confident. First, we walked around the shop and she showed me all of the amazing things that exist to help the visually impaired in their daily lives; I think she was trying to give me a few more minutes to adjust to actually buying the cane. Then, we arrived at the cane section.  What they have on display is just to give you an idea of options and sizes; the actual canes for sale are in the back.  White canes come in two different materials, various lengths and with different tip options, so Tamar helped me find the right height and material and then it was time to actually buy one.  I was scared.  I was really scared.  I was about to cross a line I had been imagining for years; I felt like I was about to become blind for real. But, I gathered my courage, took out my credit card and signed my name on the bold line.  My cane is a 50 inch graphite with a round roller tip.  Her name is Zelda.

Tamar, Zelda and I went off to a fairly deserted hallway for my first lesson in using the white cane.  Tamar taught me how to hold it correctly and, using my wrist, how to move the cane in a 2 to 10 arc as I walk.  She told me that when I step forward with my right foot,  I should move the cane to the left, preparing myself for potential obstacles on the left before I step out with my left foot. She suggested I use the mental image of kicking the cane out of the way as I step forward. I reminded her again of how horribly uncoordinated I am and I gave it a go.

It was actually kind of amazing.  For the first time in years, I walked without looking down at the ground.  I knew the cane would see for me.  I walked slowly and with a bit of a stiff gait, but I did it and Tamar said I was actually quite coordinated, that most people have a particularly hard time with the opposite step and sweep of cane thing.  I was super proud of myself.  It wasn’t perfect, but it was a damn good start.  We spent the last ten minutes of the session with Zelda and I left in a great mood.  It had been a really positive first lesson.

It has been a week since my first day with Tamar and Zelda.  I have taken Zelda out and practiced with her in the house a few times, and I took her out on the bus once ( I left her folded up and just held her), but mostly she has stayed in my backpack.  I realize that it is going to take time for me to be ready to introduce Z to the world, but I will get there at my own pace.  I will see Tamar once a week for about three months and I am confident that Z and I will be a great team by the time my lessons are completed.


I haven’t written a blog piece in ages, but I have been writing a lot of poetry.  My most recently published pieces can now be read in The Furious Gazelle.

I will be back to blog soon!!!!!

Empty Case

Every Thursday night, I take my pugs, Blossom and Jade, to a playgroup at a local pet shop.  The group is referred to as  Yappy Hour and my girls love it.  I don’t do the dog park thing, so this is the one opportunity a week they get to be off leash with a group of other dogs.

The play commences at 730 in the evening and lasts about an hour.  In the fall and winter months, it is already dark by 730, so I can just wear the glasses I use for all activities that don’t involve the sun.  My night vision is almost non-existent, but the dogs keep me in line and I always walk the brightest path along Sunset Blvd.  I have walked that stretch of road so many times, even the grooves in the sidewalk are etched in my memory.  I am not generally comfortable being out by myself at night, but I cling to the false sense of security that my pugs give me and brave the dark for their sake.

In the Spring and Summer, I am faced with a season specific dilemma.  The sun can stay out as late as 8pm on warmer nights and I struggle with the decision between wearing my sunglasses and having to bring a bigger bag with me or baring my eyes to their most bitter enemy.  I have to admit that I can be a bit lazy and so sometimes choose exposure to the sun over packing and carrying a bigger bag, but most of the time, I wear my sunglasses and bring the regular ones for the hour in the pet shop and the walk home.

On an evening in the middle of the summer this year, I got myself and the girls ready for Yappy Hour, packed their bag with treats and poop bags and put my regular glasses into another bag with my wallet.  When I got to the pet shop, I tucked myself into a corner to change my glasses and found myself in an unexpected bind. The case was empty.  I had left my glasses on my desk and brought an empty case. Without glasses, the world is a complete blur for me, so I started to panic, just a bit.  I was wearing my sunglasses, but they were no use to me; they are too dark to wear inside and it was getting dark outside.  How the hell was I going to get home?

I took it in stages.  First, I had to get through Yappy Hour without being able to see who was who or which dog was which.  Fortunately, I am well-known to most of the staff at the pet shop and the woman who oversees the playgroup is our dog trainer and knows about my RP. I let her know what was going on and asked her to keep a bit of an extra watch on my girls because I couldn’t see them clearly running around the play area.  But, I still had to figure out how I was going to get home.

I don’t know the other humans in Yappy Hour well enough to ask them for a ride home and I think most of them walk there anyway, but thankfully my husband works about 5 miles from home.  I hated asking him to leave work early, but this was an emergency.  I called him and of course he agreed to come and get me, but he couldn’t leave until almost 9 and the pet shop closes at 9.

At 830, Yappy Hour came to an end, I put the leashes on Blossom and Jade and I just sat there pretending to look for something in my bag while everyone else trickled out.  Then, I got up and began to wander the store, taking care not to topple over displays or crash into any pillars.  I chatted with our trainer for a bit, but she and the other staff were busy getting the shop ready for closing time.

The time passed like molasses.  845 and my husband hadn’t arrived.  Ten to nine, still not there.  Five to nine, the staff were locking the back door and there he appeared; my hero come to escort his blind wife home.  I was so grateful to see him, but also felt foolish and ashamed that I hadn’t been more prepared.

Since that night, I haven’t left the house without making sure my glasses are in the case.

Life in Degrees

With my recent decline in vision and subsequent approval for mobility training, I have been retracing my RP life in degrees.  When I was diagnosed with RP, I had about 50 degrees of peripheral vision.  7 years later, I had lost 50% of my already limited vision and had only 25 degrees; that was when I stopped working.  In the 7 years since I have stopped working, I have lost just over 5 degrees and I finally  and completely believe I made the right choice to stop working.  I have spent days feeling useless and lazy and telling myself that I should be working, that there was no absolute proof that stopping full time work was preserving my vision.  There still isn’t absolute proof, but I think the cards are stacked pretty heavily in favor of not working.  I hadn’t thought about it in comparison to how much vision I lost in the first seven years, but now that I have, I feel fortunate that the progression of my RP has slowed so dramatically.  Even though the recent vision loss has put me into a whole new realm of the RP world, and that is upsetting, I am able to see the good fortune in my story.

It doesn’t mean that I am not afraid.  I am terrified.  I am already imaging myself going to sign up for the training and being shunned for the fact that I do have some vision; enough that I can get around without the aid of mobility devices and see your face when you are talking to me (as long as you are not too far away).  I feel like my RP is the same as almost every other aspect of myself; not quite right, not good enough or, I suppose in this case, not blind enough.  I am afraid of being out on the street with a long white cane that calls attention to my presence; I prefer being in the shadows.  I am afraid to take the steps I know I must take and knowing me, I will take my time.

I do plan on pursuing the training and I look forward to being less bruised and having fewer collisions, but I have to ready myself for what I believe will be a huge step and a huge undertaking.  It will also involve homework and practice and I seriously suck at both those things(which I am sure is apparent in how infrequently I post here).  But, as I continue on this path, I will write about it and share it with anyone who wants to take this part of the RP ride with me.

Navigating Urban Life

In the years since I stopped working, I have made a point of avoiding the navigation of urban life as much as possible.  I hide away.  Frustration and fear are my constant companions.  My vibrance has been sand papered away and I  blame RP, folding myself secretly into the web of it’s darkening arms. I put on a brave face and pretend that having RP is no big deal, just an annoyance.  And, then I have another collision which leads me to more thoughts about the white cane.  I think it is mostly for other people because I don’t really need a cane. I am not that blind.  Am I?

After my most recent collision in which I sustained injury, I decided, with the support of my amazing husband, that it was time to actually take the step and inquire about mobility training.  I contacted my low vision specialist who told me that I had to have a current visual field test in order to qualify for cane training; I made the appointment.

My last visual field was at least 4 years ago and at the time, I had between 20 and 25 degrees of vision; it has to be 20 or less to qualify for the training.  I had the test and waited for the results, knowing that I was facing a double edged sword.  If my visual field results were the same as 4 years ago, I wouldn’t qualify for the training, and if I do qualify for the training, it means that my vision has deteriorated.  Today I got the results. I qualify.

The news wasn’t surprising, but I was surprisingly upset. I suspected what the results would be, but I also secretly hoped they would be the same as 4 years ago. I had worked it all out in my head, the practical reasons for getting a cane, but I hadn’t really thought about how it would make me feel.   I stared at the subject line of the message, terrified to read the email. I sat at my desk, my breath knocked out of me, as panic escaped from my chest uncontrollably. When I finally got the courage and read the results, tears ran desperately down my cheeks.  How can I be blind enough to need a white cane?

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