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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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white canes

Zelda, Persephone and Maud

When I started writing my blog, it was going to be a story solely about blindness, but as the years have progressed, I have discovered that the story of my blindness is the part that weaves itself into the whole, but isn’t the only thread that gives meaning. With this realization my blog has become about a life with blindness, rather than a life of blindness. Blindness makes my life more challenging, but it isn’t all of me; it often decides my fate, but it doesn’t define me.  It leads me to places I never imagined and to the rediscovery of places I had thought forever lost.  Blindness has brought friendships and community into my life in such fulfilling and sustaining ways, and it has allowed me to work through things I believed insurmountable.  But there is one battle I just can’t seem to win, the battle of Zelda. 

If you are acquainted with my blog, then you may remember Zelda, the thorn in my eye who I tried to see as a savior, but let’s just say it was a struggle to get clarity, and continues to be a struggle.  For those of you who don’t know or remember her, Zelda is my white cane.  I wrote a whole series of posts about my early days with Zelda during my O&M lessons, if you are interested in reading a bit about her background.  

So, forward almost three years, and the truth is that Zelda has rarely seen the light of day.  It’s sad really, given that she was supposed to bring some light into my hands and help guide my way over the precarious streets in this city of questionable angels, but I just can’t make peace with her, no matter how many times I trip or fall, no matter how clear it is that I need her.  

I stashed her at the bottom of a bag, which I put in another bag, which I put at the back of a high shelf in my closet,  in an attempt to forget about her, but the bruises seem to fade much more slowly as I get older, sitting on my skin as a reminder that I am not safe. My husband will periodically mention Zelda, ask where she is and if I might try her out again.  I know he worries about me.  I tell him I don’t want to be the blind wife.  I don’t want him to feel ashamed or embarrassed.  I tell him I wish I could be less broken, feel more like a partner and less like a burden.  

I do recognize that I need Zelda, so I started to think about what it is that bothers me about her.  The reasons are many and complicated, but one tangible thing is that I find her to be way too tall.  So, I decided to try out some shorter canes.  I am just over five feet tall, and although my O&M teacher was a fan of a taller cane, I never felt comfortable with Zelda’s height.  So, enter into the picture, Persephone of medium height, and Maud who is short and round, just like me.  I don’t know if the shorter canes will help me feel more comfortable, but I do know that I have to try something.  The thing is, the virus took over just when they arrived, and now we are all at home together for the foreseeable future. When the stay at home order is lifted, I just might go outside and give them a whirl.  

Everyone Falls

Everyone falls.  Everyone daydreams and falls into states of preoccupation, falls into the arms of another person, falls to the ground.  Can you remember the last time you fell to the ground?  I know it happens, but how often?  Is it a story you tell about that one time you fell and were so fucking embarrassed?  Or maybe you cried?  Did you hurt yourself?  Were you drunk?  There is no judgement here. I have fallen and been embarrassed and cried and hurt myself, and yes, I have been falling down drunk. But, the falls that shake me the most, are the falls that can only be blamed on RP.  Continue reading “Everyone Falls”

That Kind of Day

I had leftover sweet potato fries for lunch.  Yeah, it’s that kind of day.  I can’t focus.  The city is bumpy and screeching outside my windows and I can smell summer approaching. I know that spring has only recently officially begun, but there is no Spring here, not really.  I fell on the sidewalk, while walking the dogs and gawking at the monstrous buildings that are popping up like weeds in Hollywood. I got a bit scraped up and bruised. Why does falling hurt more when you’re almost 49? And almost blind? I cry when I fall, not because it hurts, but because it reminds me.  I am resenting Zelda (my white cane, for those who haven’t been introduced) and RP and middle age. I should be working on poetry.  I am writing this blog post instead. Continue reading “That Kind of Day”

The Light Conundrum

One of the first signs of RP is night blindness. The retinas are responsible for registering and responding to light, so when you have RP and your retinal cells are dying, they can’t tell your pupils to contract or expand according to the amount of light in the room. For example, most people walk into a dark movie theater and, at first, can’t see much, but in a few minutes their eyes adjust; RP eyes don’t adjust.

My first experience with night blindness happened not long before my RP diagnosis.  I had been in a bookstore for hours, day had become night, and my car was parked on a side street a couple of blocks away.  The first part of my walk was on a busy, well lit and heavily trafficked street, but when I turned the corner onto a darkened side street, the sidewalk in front of me disappeared.  It was terrifying.  It was like walking into shadows and not being able to escape.  Eventually, I walked carefully toward the light from a street lamp about a block away, and found my car.  It can sometimes be hard to understand, but another writer with RP, (Ryan Knighton) described it perfectly; he said that he could see the lights, but not what they were meant to illuminate.

That night, the night the sidewalk disappeared, I was freaked out, but I thought I just needed new glasses; I had no idea that I had RP.  I also had more than twice the amount of healthy retinal cells than I have now, so my retinas worked a lot better and the night blindness happened in brief patches.  I got in my car that night and drove home, but I began to notice that I was having increased difficulty driving at night.  It wasn’t just the darkness, it was also the lights.

On the flip side of night blindness, there is light sensitivity. Just like the retinas don’t respond to things getting darker, they also don’t respond to things getting brighter. When most people walk outside into a super sunny day, their pupils will contract to protect their eyes from the light; RP eyes let all the light in.  For me, light sensitivity has always been a bigger problem than night blindness.  I call it light (as in, man, that is a bright light)  blindness with spikes.  That shit hurts.  You know when you get your eyes dilated and any little bit of light feels like knives in your eyes?  That is pretty much how I feel all of the time.  I can’t go outside without sunglasses and a big hat.  Occasionally, I will be rebellious and leave my hat behind, but the minute a hint of sun blasts through the top or sides of my sunglasses, I am totally blind and in pain.  And, it isn’t just sunlight, it is any bright light.  I can remember coming home from work, after a day under fluorescent lights, and collapsing on my couch, in tears, because my eyes hurt so much. I can’t read for long periods of time on any device that is back lit, because the light is too hard on my eyes; there are some days when I have just used my eyes too much and I pay for it the next day. Basically, sun and bright lights are my enemies.  Give me an overcast day full of rain, and I am a happy girl.

I have talked to other people with RP who don’t have the level of light sensitivity that I do, and those whose night blindness is much worse than mine.  I think it is important for me to stress that every case of RP is different; we experience symptoms in different ways and the rate of vision loss is different for everyone.

If you have any questions, about the RP light conundrum, or about my RP experience in general, please don’t hesitate to ask.  I actually really like having the opportunity to address specific queries, if I can.  Thank you for being a part of my story.

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Reluctant Side Kick

*To new readers: When I refer to Zelda (or Z), I am writing about my white cane.  Thank you for reading “Stories from the Edge of Blindness”

Reluctant Side Kick

Zelda and I have reconciled, again.  I suppose we are together for better or worse, but I am still her somewhat reluctant side kick, reluctant to give in and give over to her, to let her lead the way, but, my self guidance system is seriously faulty.

Joe and I were grocery shopping the other day – before I rescued Z from beneath a mound of coats and hats and bags, on the hat rack and I collided with a shopping cart that someone had left in the middle of an exit isle.  It wasn’t a bad collision; I was just left with some bruises on my legs, but when it happened, I looked up at Joe and said,”I guess I could have used Zelda today”.  He just smiled and nodded and we left the store.

As a result of this particular collision, I had to admit that I have been treating Joe unfairly.  Whenever we go out together, I depend on him to keep me from collisions and falls and the always possible rage of strangers, but what about Zelda?  If I had Z with me, Joe could shop and walk and roam to his heart’s content without having to worry about me the whole time.  I have been so selfish.  I have been telling myself that using or not using Zelda only affects me, and that simply isn’t true.

So, I have put Zelda back on a prominent hook, next to my purse and sweater, so I will be reminded to always bring her with me. I don’t want to need her, but sometimes I know I will, and when I no longer have the amount of useable vision I have now, I will be grateful that she and I have become well acquainted.

Encased in Glass

Welcome to “Stories from the Edge of Blindness”.  For those of you who are new readers, when I refer to Zelda (or Z), I am referring to my white cane.

Encased in Glass

My neighborhood has gone insane.  It has most definitely passed from a little nutty to totally bat crap crazy.  There isn’t a day I walk down my street or into the park near my house, that I don’t pass someone either having a full-out conversation with an inanimate object or someone only they can see, or they are throwing their rage and obscenities at me.  There is human shit on the street, mixed in with the dog shit that irresponsible dog owners don’t pick up, and corners that smell like urinals. I have to watch my dogs every minute we are out, to make sure that they don’t get into an area of grass or behind bushes where there may be human waste. Sections of sidewalks have turned into shanty towns that are populated by an array of substance abusers, down trodden and looking for safety and a sense of community; and, no matter how it may look to the outsider, these are communities.

I may sound lacking in compassion, and I can’t deny that the shit on the street grosses me out and the rage of some of the people whose paths I cross frightens me, but the communities mark a change in my neighborhood, perhaps even in the city as a whole. It is as if these communities themselves, without premeditation, are shining a light on the poverty of the city and what lies on the other side.  All over Hollywood, and other parts of Los Angeles, huge apartment buildings are being built; they are referred to as luxury apartments and charge anywhere from $3000 to $6000 a month for rent.  They are also communities; communities for the wealthy that offer gyms and swimming pools and roof decks and community rooms and super markets.  The tent communities and the luxury apartment compounds exist side by side and are built on the same premise; people looking for a place that is self-contained and feels like home.  When you strip away the filth or the luxury, human desires at their most basic, look the same.

What about the world in-between poverty and wealth?  I think it is a fence, a tight rope, a purgatory of sorts.  For me, it is one of many fences that I perch on, waiting to see which side will pull me down.  I live on fences between blindness and sight, between success and failure, and between poverty and wealth.  Are those of us who live in purgatory also a community?  Or are we in limbo, waiting to see where we end up?  Sometimes I feel like I live encased in glass, a witness to the crumbling and to the building up of my city.  Perhaps the spaces inside the glass, on the tight rope, in purgatory, are actually the best places to reside.  I ride neither high nor low.  I am comfortable and content on my fence.  Does this make me complacent?  Callous?  Naive?  Wise? Lucky?  I don’t know.

In all of the chaos and change that I witness from such a strange vantage point, the same questions come back to me.  Where does blindness fit in to the equation of the city?  Where does Zelda fit in? Does Z make me invisible or put a target on my back?  Perhaps it literally depends which side of the street we are on; which side of the fence we dip our toes over, from one moment to the next.  Or, is it most likely, that neither community can see the blind lady up on the fence, encased in glass?

#11 On our Own

Two days ago, I was visiting my Dad, and my StepMom got really sick.  So sick, we had to take her to the emergency room. She is totally fine now, but in the chaos of getting her to the ER, I left Zelda in my Dad’s car and haven’t been able to get there to pick her up.

I have to admit, not having Z the past couple of days has felt like a relief.  I got to go out and do errands at my own pace; of course my anxiety level was at an all time high, but I didn’t feel weighed down by the cane and at the time it felt like an o.k. trade off.  I started to feel like I might just retire her to an obscure hook in my closet and hope for the best when I go out walking.  But, then my husband interjected his usual wisdom.

Joe compared my not using Zelda to an insecure person continuing to drive when they know they should stop (which I can, of course, relate to, having had to give up driving at 34).  I think that what he was saying, in basic terms, is: everything is ok until it isn’t.  I may feel like being out with Z is fine because I still have usable vision and most of the time I make it back home unscathed, but that isn’t a guarantee.  I have probably had more close calls than I know about, because I didn’t see the car or person or bicycle etc. that I almost collided with.  Fuck….why is my husband always right?

Tomorrow, I will pick up Zelda.

Speaking of Zelda, today was supposed to be my 11th and last lesson with Tamar, but I cancelled it.  I thought it would be silly for me to show up at the Braille Institute to meet my O&M instructor without my cane, and I wasn’t sure until last night that my Step Mom was completely on the mend.  So, I texted Tamar to cancel and tell her that I thought we didn’t really need to meet again; for our previous meeting, I took her out to lunch and gave her a card and was totally prepared to say goodbye, so maybe I needed to stick to my plan and have that be our last meeting.  I suck at goodbyes and I didn’t want to have to go through it all again.  The problem is, I may have burned an important bridge; Tamar never got back to me and I don’t know if she is just busy or pissed off that I cancelled another lesson and told her I didn’t think I needed any more, in a text.  The text was super nice and filled with honest sentiments of gratitude, but perhaps she would have preferred a phone call, or maybe I just totally screwed up her schedule.  I figured she had taught me all I need for now and it was time for a new student to benefit from her skills and knowledge.  I hope that I didn’t completely piss her off, but in any case, my O&M training is officially over and Zelda and I are on our own.

 

#10 Prolonged

I imagined that the end of my mobility training would have clear and dramatic lines, but the end has been prolonged and is petering rather than exploding.

I took Tamar to lunch on Thursday, to thank her and to say goodbye, but we decided to meet one more time so she could teach me about the logic behind the madness that is the layout of Los Angeles.  That will happen next week, but it still feels as if my time with her has come to an end, and also as if it never has to entirely come to an end.  I know that she will be around and available if ever I need some more lessons.  So, what now?

I am in my air-conditioned apartment, avoiding the heat wave that is suffocating Los Angeles.  I write and try to reflect on the past three months, how my life has changed now that Zelda is in it and how I am still so resistant to that change.  I decided to be kind to myself around the resistance; I am not on a clock; RP has no adherence to time and I can incorporate Zelda into my life in whatever ways I choose.

Right now, I look at Zelda and I feel exhausted, and like a failure. I always imagine myself as so strong, able to go into a situation with fearlessness and embrace whatever fucked up thing I am forced to undertake; but this is my fantasy and, inevitably, I come out the back door, the same chubby, middle-aged, screwed up person who walked through the front door. But, this is just one side of the coin, and although it is pressed pretty flat to the ground at this minute, I know it can be flipped.

On the other side are all the discoveries I have made about how Zelda can change the landscapes I traverse.  I own the moments when the world came to life through sound and touch, and how those things allowed me to shed my anxiety.  I recognize that it takes courage to bring Zelda into my life and to write about it in the most honest way I can.

Next week will be my last official lesson with Tamar and my last O&M post, but I think Zelda and I may still have some adventures to come.

ERG – Take 2

The day of my RP diagnosis was filled with different tests, including an ERG (Electro Retina Gram), which tests the retinas response to light.  It was by far the most grueling of the tests that day ( I wrote about it in another blog post when my blog was brand new), but I was lucky because I didn’t have to have another one…..until yesterday.

I have to say that this time, the ERG was much less traumatizing, both because I knew what to expect and because the woman administering the test was compassionate and friendly (the opposite of my first experience).  Don’t get me wrong, I was still freaked and the test still seriously sucks, but a friendly and competent tech makes a huge difference.

For those of you not familiar with the procedure of the ERG/Dark Adaptation test, let me give you a run down. After your eyes have been numbed and dilated,  you have to sit in a completely dark room for 30 minutes; and I mean completely dark, like the woods in the middle of a cloudy night with no moon dark.  The idea is that 30 minutes will be enough time for your eyes to adjust as much as they can, which with RP is pretty much not at all, as most of us have night blindness.  I sat there in the room trying to meditate and, every few minutes, I put my hand in front of my face to see if it was becoming any clearer.  It never did.  The first time I went through the 30 minutes in the dark room, I was terrified and crying; this time, I was more contemplative.  I kept my awareness on the darkness itself; it was as if I could see inside of it.  It felt like a web around me and was at once suffocating and endless.  I was more curious about it than afraid of it.

After the 30 minutes went by, the tech came back into the room, through a special door, between the outer room and the dark room, that prevented any light from entering.  It is very important that the first part of the ERG be in darkness; hence the dark adaptation portion. And, then the real fun began.  First, she gave me some more numbing drops and while they were doing their thing, she attached an electrode to my forehead and started prepping the discs.  Plastic discs (they call them lenses) get inserted between your upper and lower eyelids to prevent you from blinking and ensure your eyes stay as open as possible during the test.  The first pair of lenses she tried to insert (the one’s for grown ups) were too big.  She left the room and came back with pediatric lenses; also too big.  What the hell, I thought.  I know I have tiny eyes, but they are bigger than a babies eyes.  She came back with the smallest lenses and those, finally, went easily into place.  She told me that I required the smallest lenses because I have high cheekbones, like Cindy Crawford.  I think she was just being nice, but I was grateful that she didn’t try to force the grown up lenses between my lids.  It became clear to me that the first ERG tech had forced the larger lenses and that must have added to the horror of the whole thing.

To insert the lenses, she asks me to look down while she pulls my lashes and upper lid open, placing the disc first into the top part of my eye and then into the lower.  She then attaches electrodes to each of my cheeks and tapes the wires into place.  The room is still dark and I still can’t see a thing, so I turn my chair to where I think the testing device is (turns out I got it right) and she guides me toward the chin rest.

The testing device is a big dome with the chin rest at the opening.  At the back of the dome is a red light; she asks me to try and stay focused on the red light; it is the first light I have seen in an hour.  Then the test begins.  For the first part, the dome remains dark.  Lights shoot toward my eyes about five or six times, then stop and then start again with varying intensities.  There are about 6 rounds of flashes in the dark and then she turns on the light in the dome.

It is an insanely bright light.  And remember, my pupils are dilated, my eyes are being kept open so I can’t blink and I have increased light sensitivity even when my pupils haven’t been dilated (another perk of the RP).  This is pretty much my worst nightmare. The tech tells me I have to wait five minutes to adjust to the light. My eyes are in agony.

The first sets of flashes are, like the ones in the dark, about five or six seconds a piece, but this time, I have to wait 2 minutes between each set.  My eyes are burning and stinging and the lights in each set increase in brightness and speed and each 2 minute waiting period feels like two hours.  Thankfully, the tech talked to me and kept me aware of the time; she was really sensitive to how I was feeling.  She knew what was coming.

They save the best for last.  The final two sets of lights are successive and last about ten seconds each.  The lights are like frantic strobe lights that shoot at your with a force of brightness that takes your breath away.  The very last sequence was so intense and painful that my lower lip and chin started to spasm.  Ten seconds of pure hell.

The technician was pretty quick, thankfully, to get my face out of the dome and the lenses out of my eyes.  Then, she rinsed each eye a few times with a really cold saline solution and told me my pupils would be dilated for at least another 2 hours (I knew it would be more like 4) and that my eyes may feel a bit dry and scratchy for a few hours after the numbing drops wore off.  She led me to the door (she was a good guide, by the way) and I stepped out of the nightmare and into a bright blurred hallway.

I couldn’t see a thing.  Luckily, I had Zelda.

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