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Stories From the Edge of Blindness

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

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retinal disease

Once a Year

Tomorrow is my annual appointment with the retinal specialist.  I used to suffer from at least a week of anxiety and fear leading up to the appointment, but I have been through it so many times, I now start getting anxious about it just the day before.  I suppose I am lucky that I only have to go once a year, given that there is no treatment for my disease(that isn’t so lucky), but the day is always long, painful and exhausting. Continue reading “Once a Year”

On the Edge

This has been a monumentally good week for me in regard to my vision.  Finding out that I will likely maintain enough sight to be able to read and write and see the faces of those I love, has altered my path and left me feeling immense gratitude.  I have allowed myself to feel genuinely happy about this, which isn’t something I always do.  However, I am also left reflecting on how RP has and will always impact my life.

I have spent so many years on the edge of blindness, agonizing about living in this confusing place between being sighted and being blind.  I have held my breath in anticipation of being pulled from the precipice by inevitable darkness.  I have been on a wire, balancing precariously, waiting.  Now, knowing that I may never go completely blind, I am elated, but still on the wire, still faced with the confusions that come with being partially sighted.  I had resigned myself to the future I thought RP had in store for me, but now I have to figure out how to settle onto this weird middle ground, how to resign myself to the fact that I may always reside on the edge of blindness.

I am, of course, grateful for the vision I maintain, but living in what I have called the “purgatory of sight”, comes with its own set of challenges.  I am not a religious person by any means, but from what I have read, purgatory seems like a pretty fucked up place to be.  It is neither here nor there.  It is nowhere and nothing.  It is a place of invisibility, which does not hold the cool factor of a cloak of invisibility, because you can’t take it off when you feel like being part of the clear and whole picture. There is a picture and I can see it, but it will never be clear and it will never be whole. I feel stuck, trapped, truncated. But, this isn’t new.  This has been my reality for years.  What’s different is that I have been given a choice I didn’t know I had a week ago.  I can choose to focus on the good fortune of the sight I still have and may have for the rest of my life.

The landscape in front of me has at once changed and stayed the same.  I still have RP.  I am still blind and the reality of my brand of blindness is incredibly confusing.  I am still on the edge, but perhaps it is where I have always been, long before RP came into my life.  It is a crazy view from where I stand, but it is the view that gives me the words that I write and see on the page.  I can see the words on the page.  I will be able to see the words on the page tomorrow and maybe for the rest of my life.  I don’t take this lightly. I am so incredibly lucky.

 

The Good News and the Bad News (which really isn’t so bad)

I am so incredibly grateful and overwhelmed for the outpouring of care and support I have received since my last post.  I am a lucky woman!

This has been a month of having my whole body poked and prodded and getting preventative procedures, but today I am finally home and done with all of it and wanted to write an update regarding my visit to the retinal specialist.

I will start by saying, it was a good visit.  That said, it was an incredibly long day in which my eyes were put through hell, but I am a pro at this point, so I take it all pretty much in stride.

I won’t give a detailed account of the 5 hours I spent at the Eye Institute, but I do want to write a little bit about the research and gene therapy thing.  Truthfully, I am still learning about the science of it all, and if it interests anyone, I will share information as I learn more, but I did learn a little yesterday, which leads me to more questions, which is I guess the nature of science, in some ways.

I have met others with RP who feel the way I do about following the research too closely and many who are very invested in following it closely.  My experience at Jules Stein yesterday is a good example of why I personally haven’t chosen to follow the research.  Part of it is emotion and part of it is trust and good fortune.  I was in the waiting room (about half of the visit is always spent waiting) and started to think about this new FDA approved gene therapy, which led me to start thinking about what it would feel like to have the independence of being fully sighted, and I started to feel excited and hopeful.  How cool would it be, after all of these years, to be able to feel the ease and convenience of a sighted life?  Then, I overheard bits of a conversation; a patient and a research assistant were sitting near me going over release forms for the patient to be enrolled in a research study.  During the conversation, the woman asked something about retinal diseases, other than her own, that were part of the study; the research assistant said something along the lines of,” there are other diseases, like Retinitis Pigmentosa, but they are much more difficult when it comes to genetic research”. I don’t know if this is true, but it was enough to  knock me down from the heights of hope, and that fall is a long fucking way down.  I started crying right there in the waiting room (yes, I am that person) and thinking of a way to describe the feeling of plummeting from hope into despair in regard to the research issue; perhaps it is like being offered something sweet over and over again and every time, you are left with a mouthful of bitterness.  It was a good reminder for me of why I don’t keep up with research.  I am not criticizing those who do; we all have our own ways of grieving and coping and we can only be true to ourselves in that respect. There is no right way to do it; there is just what works for us as individuals.

I was feeling pretty depleted, but I decided I would talk to Dr Sarraf anyway and get his take on it.  I asked about the gene therapy I had read about in the New York Times, and about being referred for genetic testing; he told me that there is no existing therapy for me, that I have the most common form of RP and therefore the genes related to it are more difficult to pinpoint (this is not a direct quote).  I felt thoroughly un-special. He said that he doesn’t recommend genetic testing right now, but let’s see what happens in the next few years and if there are trials that are looking hopeful, we can talk about it again.  So, this is where the trust and good fortune part come in.  Dr. Sarraf is one of the two leading researchers at UCLA,  in  the study of degenerative retinal disease.  I am incredibly lucky to be one of his patients, and I trust that if there is a treatment for me, he will make sure I know about it and get in on it.  I am lucky to be able to leave the research stuff in his hands, while I go about the life with RP stuff.

I think Dr, Sarraf was feeling bad about not being able to offer me anything in the realm of treatment, but, he gave me some really good news! He told me that given the fact that the RP hasn’t started invading my central vision, he thinks there is a good chance that I may never go completely blind.  This is incredible; it means I will be able to keep reading and writing with the use of my eyes.  It means I can look at my husband’s beautiful face and into the loving eyes of my pugs and my cats, for many years to come.  It means I will be able to travel and see things I have never seen. It is not lost on me how incredibly fortunate I am.

Dr.  Sarraf’s parting words to me were,” So, the good news is that your central vision isn’t deteriorating( with the exception of a very minor change in your right eye), and the bad new is that you have RP and very limited peripheral vision”.  I already knew the bad news, and the good news, at this point, far outweighs the bad.

I am not particularly brave or strong; no more than anyone else and much less than many.  I am finding my ways of coping with my personal journey through this crazy disease and through life.  It is my way to look at and embrace the messy things that face me; I have learned that trying to escape them doesn’t work.  Some days are great and some days seriously suck, but I choose to muddle through and write about it honestly.  I try to keep my blinkered vision at bay and be as truthful as I can, as a woman and as an artist.  I am grateful and I am so damn lucky!

Now, it is time for me to rest my eyes,  and treat them with kindness, respect and gratitude.  Thank you again for all of the amazing support.  And, please please don’t hesitate to ask questions; I know I always inevitably leave stuff out.

 

Contemplating the Water

My Dad lives across town and when I visit him, usually a couple of times a week, I often take the bus to UCLA and he picks me up by the medical buildings.  I was walking to meet him the other day, at the usual pick up place, not really paying attention because I am pretty familiar with the route, and bang; I had a head on collision with a bright blue light pole.  The thing is, I had Zelda with me…tucked safely inside my bag.

Zelda is my white cane and we hang out together, a lot.  I take her pretty much everywhere I go, but I have to be honest, I haven’t actually been using her.  I figured I could just use her when I need her, but this is some pretty skewed logic.  The nature of my blindness is that I don’t see what’s around me, so things like poles and curbs and cars, jump out at me from, seemingly, nowhere.   With the exception of walking at night and in dark spaces, I can’t really anticipate when I will need Z.  I understand that this means I probably need her all of the time, but that means accepting her and the truth of my vision loss.  How is it that I can live so deeply inside the reality of my blindness, and yet turn my back on it with such alacrity? Perhaps I am not really living inside the reality of my disease, but more tangled up in the confusion of it; one of the most difficult parts of my blindness is that I can still see.

I know that one day I will come to  accept and appreciate Zelda, but it has always been my way to come to things slowly.  I am more of a stare at the water for a really long time and contemplate the idea of putting a toe in, rather than a jump in with both feet, kind of person; honestly, I often get up and walk away from the water altogether, taking a road no-one else seems to see. I guess I am trying to walk away from my affliction, but the reality is that now, all roads lead back to RP.

Isn’t that Something Only Old People Get?

RP is anything but straightforward; it comes with lots of extras that you wouldn’t expect. A year after my diagnosis, I thought I had become pretty versed in the language of RP and what I might possibly be faced with as the disease progressed.  Night blindness had become a part of my fabric, light sensitivity was something I was constantly dealing with and I was learning how to become a vigilant scanner while walking down the street.  But, I had only skimmed the water.  And, at that time, I still had about 50 degrees of vision.  This diagram may help with the whole degrees of vision thing.

IMG_0445

As I understand it, normally sighted people have about 85 to 110 degrees of vision, well into the far peripheral.  At the time of my diagnosis in 2002, I had about 50 degrees.  Now, I have between 15 and 20 degrees, and in the RP world, that is actually pretty good. I think this diagram also shows how much of what we see is considered peripheral vision. This was a bit tangential, but I hope it gives some clarity.

So, back to 2003.  I was due for my annual visit to the retinal specialist; Dr. Heckenlively had left UCLA to work in Michigan and his patients had been split between 2 other Retina guys.  It would be my first time meeting Dr. Sarraf, and despite the fact that he would inform me of an RP extra I hadn’t expected, I loved him.  Dr. Sarraf is an incredibly kind and gentle doctor, who gets genuinely excited to give good news and is insanely smart; he is one of those serious research guys and I am lucky to be in his care.

The day I met him, he walked into the darkened room, shook my hand, chatted to me for a while and proceeded to examine my eyes.  I can’t lie, I don’t look forward to this eye exam; it hurts, a lot.  My light sensitivity is extreme on a regular day, even with sunglasses, so imagine how much a bright light aimed directly at my dilated pupils feels; it’s like someone is poking my eyes with hot needles.  Not fun.  Anyway, I digress.

Dr. Sarraf does the exam, sits back down in his chair and, in his soft and comforting way, tells me that I have cataracts in both eyes.  What the Fuck?  Cataracts?  Isn’t that something only old people get?  Apparently not.

Here is a simple explanation of cataracts: A clouding or loss of transparency of the lens in the eye as a result of tissue breakdown and protein clumping. Cataracts affect most people who live into an old age. Symptoms include double or blurred vision and sensitivity to light and glare.

Cataracts are commonly seen in RP patients, but doctors and researchers don’t seem to know why.  When Dr. Sarraf told me I had cataracts, I felt devastated, which was difficult for some people in my life to understand.  I remember my step mom telling me that it wasn’t a big deal because cataracts can eventually be treated, but for me, it was a huge deal.  Of course I knew that cataracts could be removed, but I was 34 years old and I sure as hell hadn’t met any other 34 year olds who had fucking cataracts. It was one more thing piled on top of everything else that RP had brought into my life; it was one more thing that made me feel defective, broken and different.

Almost 16 years later, the cataracts are still there, slowly ripening, but I don’t give them much thought. They are just another thing that comes with having RP, an added challenge to an already challenging disease. I don’t love that I have them, but I have accepted the cataracts as part of my RP journey.

 

It’s Right in Front of You

I was 33 when Dr. Heckenlively told me I was going blind.   After dropping the bomb, he took a vial of my blood to, as he so eloquently put it, “rule out syphilis”,  gave me a list of vitamins that might slow the progression of my disease, and sent me on my way. I felt like I had been punched, like I was lying prostrate on the floor and couldn’t breathe.  I was overwhelmed, felt clueless and afraid.  I had no idea what RP was going to do to my life.

When I first heard about RP, it was from a TV show, and a million miles away from my reality.  The TV program talked about RP being genetic and introduced families with multiple people affected by the disease; the first time it was suggested that I might have it, I ignored it because no one in my family even wore glasses, except me.  I soon learned that RP is most often genetic, but not always; there are a handful of us that are the sole proprietors of RP in our families, and in my case, I was completely unprepared for it.

I did my share of online research in the months before my diagnosis, but a lot of it was about the genetic aspects of RP; this gave me a false hope that I didn’t have it.  I read countless simplified descriptions of RP symptoms: Night blindness, loss of peripheral vision and eventually central vision, resulting in total blindness.   I am not a particularly sciencey (yes, I know that isn’t a word) person, but I will try to throw a little bit in here.  Basically, the retinas are made up of 2 kinds of cells (photoreceptors), called rods and cones.  The rods are responsible for low light and night vision, while the cones are responsible for color and detail.  There are way more rods than cones, and the rods are the ones that begin to degenerate first in a disease like RP; that is why we experience night blindness and a loss of peripheral vision.  I am sure this is a very rudimentary explanation, but hopefully you get the sciencey picture.

When most of us think about peripheral vision, we think about stuff that is seen way off to the side, or out of the proverbial corner of the eye.  The truth is, because peripheral vision is dictated by the rods and the rods are pretty plentiful, peripheral vision is actually most of our vision.  It is what you see all around you, not just way off to the side.

About six months after my diagnosis, I remember looking for a coin purse that I had dropped on the ground; I was looking all around, repositioning myself, but I couldn’t find it. The person I was with was perplexed and said, “it’s right in front of you.” The thing is, that phrase, “It’s right in front of you,” means nothing to someone with RP.  When you have RP, right in front of you can shift and change and disappear completely. It can seem to an observer that I am looking right at something, but if my eyes are directed just slightly to the side of whatever it is I am looking for, it may as well be a grain of sand in the ocean. Peripheral vision is huge and complex.

I have searched for my husband in our apartment, walking past his desk 10 times, and it turns out he has been sitting there all along.  When my dogs are standing at my feet waiting to have their harnesses put on for a walk, I have to scan the area several times to locate both of them.  In a restaurant, I never see the waiter trying to hand me a  menu, and glasses of water seem to materialize out of thin air.  If I drop something on the ground, I often have to ask for help to find it. RP comes with so many challenges that I could never have imagined, but I am learning to be more patient; to take the time I need to find things and not allow my frustrations to take control.

I am sure that I leave stuff out that people might be curious about, and I welcome curiosity, so please don’t hesitate to ask questions.

You can also find me on Twitter and Facebook.

 

 

 

 

 

What do you See?

Most of the time, I find that people seem reticent to ask about my vision; I don’t know if it makes them uncomfortable or if the concept of someone being partially sighted is just too hard to grasp, but the presence of my blindness often takes up a strange space in the room. When people do ask, I actually appreciate it because it gives me an opportunity to explain how RP behaves, and also because it offers a window into what I am missing visually, by seeing what others see.

Sometimes, I’ll be walking down the street and it will occur to me that I am seeing something in a way that may be different from other people. The other day, my husband and I were out walking the dogs; he was walking about 5 feet in front of me and I was looking at the back of his head, when I realized I could only see the back of his head and a bit of the tops of his shoulders.  I asked him to stop and look at me from behind at the same distance; he could see all of me and cars parked across the street and buildings to our left and a whole lot more. When you have RP, but still have some usable vision, it can be easy to forget how much you are missing visually.  I find myself lulled into a false sense of security, so I think it is good for me to get a good kick in the pants from reality when I slip off into space.

When asked what I actually see, there are a couple of tricks that I use most often:

  1. Look straight ahead.  Stretch your arms out to the side as wide as they will go, thumbs pointed up, then slowly bring them in and stop when you can see your thumbs.  You may not have to move them at all, or maybe just a little bit, before your thumbs come into view.  When I do this exercise, I see my thumbs when they are about 7 inches apart.
  2. When you are sitting in a chair, put your hands in your lap. Keeping one hand flat, palm parallel to your lap, start raising it and stop when you can see it.  You may have to raise your hand a little bit to see it, or you may see your hands resting in your lap. When I do this exercise, I don’t see my hands until they are in line with the bottom of my nose.

These exercises are by no means definitive, but they do give an idea of what it’s like to live with diminishing peripheral vision; and, in the world of RP, I actually have a good amount of vision….I think. Every case of RP is different.

I thought I might write a series of posts that give a better idea about the mechanics of RP.  If you found this post interesting or helpful in gaining a better understanding of RP, and you would like me to write more, please let me know.  If you have any specific questions, please ask.

You can also find me on Facebook and Twitter.

 

#8 Blindfolded

Tamar and I got right to work today.  I had a pretty good week with Zelda and I was running late this morning and screwed up Tamar’s schedule a bit, so no need or time for a therapy session; I also think we were both trying to avoid getting me too anxious about what was to come.

When I saw Tamar coming up my walkway, I noticed she was holding a surgical mask – aka blindfold – and I knew she hadn’t forgotten what she promised the week before; perhaps I was very slightly and secretly wishing she had.  She smiled and asked if I was up to it; she is always respectful and asks how I am feeling, but doesn’t let me get away with backing out of things she knows I can handle.  I was ready.

We walked to the south end of my driveway and she handed me the blindfold.  Before I started walking, we had an exchange that was so subtle, but empowering for me.  I asked her to hold onto my sunglasses while I put on the blindfold and after it was secure, I opened my purse, found my sunglasses case, asked her for my sunglasses and put them away.  I know it sounds insignificant to simply put one’s glasses away, but the fact that Tamar just let me do it without trying to help or take over made me feel competent.  Before I took a step, I had begun to feel confident that I could navigate the world without the use of my eyes.

When the blindfold is on, I always close my eyes; I can see light coming through but no images, and it makes me feel calmer when my eyes are shut.  I surrender myself to the experience, relax into the darkness and try to allow my other senses to tune in.  It is really a sort of meditative process.

After the blindfold is secure and my eyes gently closed, I take a breath and then a step.  Tamar tells me to stop.  We are in-between my driveway and the driveway of the building next door. She asks me to listen.  Do I hear cars?  The garage gate opening? She asks me to feel with my feet.  Do I notice the ground beginning to slope downward?  And of course, to feel with Zelda.  What is to the left and right of me to indicate we have come to a driveway?  The end of a grass line or wall?

I listen.  I hear cars, but they are behind me on Sunset; not close enough to be a danger.  The gate is quiet and there are no cars moving parallel to me.  I feel with my feet.  As I approach the driveway, the ground slopes slightly downward and my ankle pivots to adjust to the change.  I put Z to work, swinging her to the left and to the right.  She alerts me to a low metal wall on the right which I know indicates the north side of the driveway of the building next door.  She also lets me know that the ground level has changed.  I determine it is safe and we move on.

We are taking the same path as the previous week, and of course this is my neighborhood so I have a mental map of the terrain, but without the use of my eyes, the experience is completely different.  Using Zelda, I get a much better feeling for exactly how wide the side-walk is.  I know that there is grass on either side of me as I pass the building next door, but now I feel the contours of how and where the grass lines begin.  In some places, the grass sits above the sidewalk and in others it sits below and creates a subtle drop off; when I am using my eyes, a subtle drop off can have me flat on my face in less than a second.

We continue down the street, past more driveways and buildings.  At one point, I hear someone get out of a car, so I stop and listen to both what the car is doing and in which direction the person is going.  The car drives away and the man ( I know it is a man because I can hear him talking on his phone) crosses my path and proceeds up the stairs on my right.  I know he is walking upstairs because I can hear the change in his footfalls.  It is incredible; most of us have heard people on the stairs, but it is as if I was hearing the stairs themselves; the way they received the weight of the man and the material from which they are made; solid concrete that responds with dull recognition to the mans feet.  We walk on.

We are about two-thirds of the way down my block; I know this because I can hear the cars on Fountain Ave. more distinctly.  We cross more driveways, feeling the dips in the sidewalk and we encounter trash cans that have been left out and a couple of times I veer too close to the street and Z let’s me know by alerting me to a parked car.  We pass a friend’s house with tall hedges in the front and I know we are just one building away from the intersection.  I slow down, considerably, and Tamar tells me to keep going, trust Zelda.  I continue to walk, hearing the cars on Fountain as if they are inches from me, and then Zelda dips down abruptly and I know I have found the curb.

Tamar asks me to listen to the traffic and position myself so the cars are to my right, running parallel to me.  She says I should hear them at my shoulder.  I put myself in the right direction and again head toward the curb.  Zelda let’s me know I am there with no problem and I do my A (anchor) B (staying behind Zelda) C’s (check it out); I find the edge of the curb with my foot and test the depth with Zelda and then I stop again and listen.  I am listening to find out if my parallel cars are moving or stationary,  and for the presence of a possible right turner.  I know the light is green when my parallel cars are moving past me, so I flag my cane and proceed across the street.  Half way across, I hear something I never hear at a moderately busy intersection, or even on a quiet street; I hear a Prius.

When I am out with just my eyes and no Zelda, I am on constant look out for all Prius type cars.  They creep and sneak and barely make a sound; or so I thought.  I heard the Prius today as if it was as loud as any other car. It was such a distinct sound from all of the other traffic, like a voice joining an orchestra with pristine timing.  It turned left and raced over the cross walk in front of me.  I will fear the Prius no more.

Tamar and I continued down a small, narrow stretch of Fountain Avenue.  Zelda alerted me to low walls, telegraph poles, and the curb when I veered too far to the right.  When we got to the next crossing, I got myself positioned, waited for the surge of parallel traffic, flagged my cane and got on my way.  At the other side, Z found the curb where I did my ABC’s, made sure the path ahead was clear of poles, furniture, sleeping men and garbage cans and stepped up onto the curb.  Tamar didn’t have to give me a prompt this time; I listened and positioned myself to make sure the traffic was to my back and knew I was heading North on Martel Ave.

I was feeling in a groove; nervous but happy.  I was actually having fun discovering how amazing all of my other senses can be, and feeling a heightened confidence in Zelda.  Martel is the street with the crazy, colossal mountain of broken, raised and dipping sidewalk (all in one small area), and I knew it was coming up soon.  I wasn’t nervous; I think I may have actually been looking forward to it.  It wasn’t because I had done it the week before, but because the anxiety of having to use my eyes wasn’t there.  I knew that I could trust my feet and my ears and Zelda, so much more than I can trust my eyes.

I made it across the mountain obstacle and up Martel to Sunset Blvd, where I veered to the right at one point, toward the curb and traffic, but Z let me know and I corrected my position and walked on.  I apparently have an unfortunate tendency to veer to the right, but with Zelda to warn me of what’s ahead, I can deal with it.  During all of this, Tamar didn’t once try to pull me out of harms way or shriek in fright as I neared a potentially dangerous area; she just trusted that I could do it and let me do it.  Of course I know that she would never let anything happen to me, but I know that she has faith in my ability to make it through this and that helps me believe it as well.

Tamar asked me how my anxiety level, when I was blindfolded and with Z, compares to being out with just my eyes to assist me.  I realized the difference is astounding; it is as if all the stomach tightening, teeth clenching fear and distress are pulled off my back when my eyes don’t have to be in the picture.  I was nervous and, at times, wary; but not once did I stumble, trip , fall, stub my toes,  injure myself or crash into anything. I think I may be warming up to this white cane thing.

 

 

#7 Off-Roading with Zelda and Tamar

I have officially graduated from my lessons at the Braille Institute; Tamar came over to my house today and we have begun our lessons out in the (mostly) sighted world.  Although I have been using Zelda when I am out alone, it is a whole new world with Tamar, who can guide me step by step – sometimes literally – and give me critique about how I am doing with Zelda.  There  is always a bit of performance anxiety when I am using Zelda in front of Tamar, but it is a good anxiety that gets me to understand the importance of and pay attention to the details I sometimes forget when I am on my own.

I have to admit that lack of practice is a huge obstacle that stands like a concrete wall between me and progress with Zelda.  Having taken a week off and only been out once on my own when I actually used Z, I needed a good long therapy session before Tamar and I headed outside into the neighborhood.  She is incredibly patient and intuitive about when I need a bit of time before beginning the practical part of the lesson.  I have been pretty forthcoming about my anxiety in using Z in my neighborhood, so today we spent about half the time talking in my apartment.

I talked further about my fraud feelings and she told me that she sees this more in RPer’s than anyone else; she said it seems to take longer for us to get through the emotional barriers because, in many cases, those of us with RP have pretty good central vision.  I felt relieved actually, to hear that I am not the only emotional basket case and that lots of other people with RP are victims to its total mind fuck.  Tamar also reiterated that she believes I need the cane and that I am doing the right thing in getting the training now. If only I had her certainty about it.

Before we went out, Tamar suggested a sort of makeshift way to gage my field of vision, so both she and I could get a clearer picture of what I actually see.  We got out some old- school, bright pink construction paper and Tamar cut out a triangle to tape to the wall.  She asked me to focus on the triangle and then moved pink squares of paper in toward the center, from both sides and the bottom and top, until I could see them.  She taped the squares to the wall at the spots where I said I could see them and this denoted my field of vision.  Obviously, it isn’t exact, but it is a good reference to have.  However, it also makes me question myself, just like a proper visual field test does.

I am not always sure what it means when asked if or when I see something in my peripheral field.  Does seeing mean seeing clearly or thinking that maybe you have some visual awareness of something?  If I am focusing on one spot, do I actually see what is coming in from the sides or am I concentrating on it so hard that I think I might see it?  In the case of today’s experiment, the pink squares, and in a visual field test, the red lights.  I often do little tests on myself; bringing my hands in from the sides or up from the ground, trying to gage when I can see them.  I feel like it isn’t always the same.  Some days I feel like I am seeing the whole word around me and some days, I feel like I am looking at the world through a tunnel.  So, what’s real and how do I know it’s real?  It all makes me feel crazy and it puts me in a position where I am still constantly questioning whether or not I actually need to be doing the cane training.  I don’t know when this ends, or if it ever will; and I don’t know how to move beyond it so I can just use the goddamn cane regardless of how much vision I do or don’t have.

There is another bizarre phenomenon that occurs when you have RP.  You can be walking down a hall or corridor and all of a sudden, you see something flying at you from the periphery, but there is nothing there.  It feels so real, that I have almost fallen backwards to get away from the phantom flying thing.  So, is what I think I might see in the visual field experiments a phantom or do I see it?  I don’t think it helps that I question absolutely everything I do, think, say or feel in most circumstances that have nothing to do with vision or lack thereof, so when it comes to my vision loss, I feel as if I am in a constant state of unknowing.

I took a break from blogging and went to have dinner with my friend Patricia who, as always, listened patiently to  my ranting and came up with a brilliant suggestion.  She had the idea that I think of some ritual to mark this period of mourning in my RP journey; a tattoo, a ceremony , a burning of something; just something that acts as a tangible marker of this experience.  She suggested that perhaps if I ritualized these losses in some way, it may give some sense of finality and help me move into the next phase of my life and of my disease.  I  love the idea.

After the therapy session with Tamar this morning, we did make it out of the apartment.  It was to be my longest walk around my neighborhood and the most in-depth.

First, I used Z to go down the stairs from my apartment; something I hadn’t done yet.  It all came back pretty easily and I got to the bottom unscathed.  Then, we decided to walk down my street and around the block.  I start walking, Tamar behind me to gage my stride and swing: it turns out that my formerly wider than necessary swing has now become too narrow.

We stopped just outside my building where Tamar asked me to look around and identify tangible landmarks that can tell me where I am when I have no use of vision.  For example, just north of my driveway, there is a hedge that is taller than I am, and at the south end of my driveway is a tall and dented metal pole.

We walked down to the end of my block and spent a long time at the street crossing; the intersection at the south end of my block is a pretty basic four-way with traffic lights and no left turn arrows, but Tamar wanted me to tell locate my buddy cars, danger car and go over the flagging steps to make sure I was confident before crossing the street. I had told her earlier that I wasn’t warming to the flagging the cane thing, but she let me know that it is the most important part; it let’s people know that you are there and is the biggest safety precaution for blind people crossing the street.  So, I flagged the hell out of Zelda.

We continued east and came to the next street crossing; a 3 way intersection with one stop sign.  The only obstacle at this crossing was a large hedge that blocks the pedestrians from the right turning cars, so I had to step a bit into the street to make sure it was clear before I walked.  Not to bad.

After the second crossing, we headed North and I could see a huge obstacle course on the sidewalk up ahead.  Tamar was excited. We got to the rough terrain, and she asked me to close my eyes.  I started tentatively.  This wasn’t just a patch with a bit of raised sidewalk; there was also an orange traffic cone, a grassy hole in the middle of the course and loose slabs of concrete that had been placed there presumably to make the ground more even; it didn’t work.  To the right of the monster obstacle was a patch of dried lawn, so I headed in that direction.  Tamar asked me to go the hard way.  Without any use of my eyes, I took one small slow step at a time, feeling first with Zelda, then with my left foot while keeping my right planted to steady me.  When I hit the cone with Z, I anchored her in front of me for safety and felt with my hands to find the cone and whatever other obstacles may be around.  I hesitated and teetered a bit, but I made it safely across.  I felt as if I had scaled a mountain.  I opened my eyes and gave Tamar a smile; ” Let’s do it again,” she said.

I made it across the obstacle in the other direction, but it felt like entirely new terrain.  I found the cone, which was a great marker, but it wasn’t where I expected it to be.  It may be common sense to some, but I didn’t have the time to flip the course in my head and without the use of my vision, it was entirely different.  I do have some usable vision still, so I am lucky that I don’t have to rely on everything Tamar is teaching me now, but I will have the skills and the information if and when the time comes that I need them.

The three of us continued up the block and we came to another 3 way street crossing without much event except an enormous truck that pulled out of a driveway toward the intersection.  I decided that I didn’t feel safe crossing, so we waited for the next light and walked back toward my street.  During the last half block, I looked for landmarks and tried to keep my swing wide enough for Z to give me any necessary information about the ground in front of me.  We stopped in my driveway to say goodbye and Tamar said, “next time I want you to do it blindfolded.”  Holy crap.  I was hoping we’d go grocery shopping.

 

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