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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.

Category

White Canes for the Blind

Waiting Games

For new readers:  When I refer to Zelda, I am not talking about a pet or a child or a childhood toy I just can’t seem to part with; Zelda is my white cane.

It seems I am always waiting; waiting for the next decline in my vision, waiting to hear about that poem I submitted 6 months ago, waiting for the package to be delivered from Amazon, waiting for the scale to give me good news, waiting for the next time I get to eat, waiting for the end of the day and that bottle of wine, waiting for it all to be over. And then, suddenly, something I have been waiting for, arrives.

On Monday of this week, I spent the day seeing doctors and getting tests; nothing serious, just inconvenient, exhausting, and honestly, pretty gross, so I am not going into further detail.   That said, I spent a lovely day maneuvering through the seriously fucked up American healthcare system, without Zelda.  I have been leaving her at home a lot lately; we are having a heat wave in Hollywood and I have been feeling lazy and not wanting to carry yet another thing when I go out, so Zelda gets left behind.  I may have also still been in a tiny little bit of denial, but it really is fucking hot here.

Anyway, I made it through most of my healthcare nightmare day unscathed, until I was being escorted out of the maze of the hospital by a kind, lovely and very fast walking ultra sound tech.  I was matching her pace, feeling confident striding down the corridor, and then she said, ” take a right here”, and she turned and I didn’t and the collision ensued.  When she said to turn right “here”, I thought she meant a right turn that I saw coming up about 10 feet ahead of us; the right turn she was actually talking about, I didn’t see. I had no idea what was next to me, or how close I had been walking to the wall, or how many adjoining corridors we had passed.  When she and I collided, my confidence plummeted to the ground, but I quickly scooped it up, apologized to her and told her I have severely limited vision and I really should have been using my cane.  I felt bad about almost knocking the poor woman down, but I didn’t feel embarrassed about admitting that I had a cane and that the collision was my fault because I should have been using it; it was just the truth.  If I had taken Z with me, the tech would have walked slower and I wouldn’t have been trying to groove right alone with her, feeling dangerously confident about my non-existent visual capabilities.  I took my time for the remainder of my walk through the hospital, and found a comfy chair to settle into while I waited for my husband to pick me up.

Yesterday, I was taking one of my frequent walks to the grocery store, sans Zelda, for the same reasons listed above.  As I approached the first street crossing, I thought I heard someone walking near me, but I had no idea how near. I slowed my pace a little, tuning my ears to the sounds of footfalls and rustling clothing, but when I got to the corner and reached for the cross button, I bumped into a woman who must have been just inches away from me. I still get fooled by RP a lot of the time and think people and objects can’t be as close to me as they actually are; my ears are not that well trained, yet.

The woman was super nice and friendly and didn’t seem to think twice about our collision, but it gave me pause. I realized, or perhaps I have known for a while, that my vision has gotten worse.  Decline in vision is something that someone with RP is always waiting for, but in my case there has been a lot of uncertainty about whether or not it is actually happening.  I am fortunate that my vision loss has had a very slow progression, and there have been so many times when I feel pretty convinced that I am not seeing as well,  and it turns out that my vision is stable.  This time is different. I feel the world pressing in against me; the shrinking circles of my vision have become more prominent.  But, somehow, being in the center of the decline, looking at the world with the heightened sensation of tunnel vision, I don’t feel afraid.  I have been waiting for this.

During the rest of my sojourn to the grocery store, I must have had at least 10 near collisions and people coming at me from, seemingly, out of nowhere.  I kept thinking over and over again, “I wish I had Zelda with me”.  I think I’ll take her out today, no matter how hot it is.

 

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Across Town

*Note to new readers: When I refer to Zelda, I am not referring to my pet, child or doll, but to my white cane.

Across Town

A few weeks ago, maybe a month, I rescued Zelda from her hiding place on the hat rack and I have been carrying her with me whenever I go out, but she has remained folded up and tucked safely into her case.  I figured that eventually, I would encounter a situation where my anxiety about not being able to see would outweigh the anxiety looming over me about using Zelda.  I have, over the past month, found myself thinking about freeing Z from her case, and even wishing I had due to a few collisions and subsequent bruising, but she stayed put…until yesterday.

Most Tuesdays, I visit my Dad and Stepmom at their house across town, and on the days when my husband can’t drive me, I often feel anxious and start procrastinating when it gets close to the time I have to leave; even more so since Zelda became a part of my life.  I always thought that the anxiety was due to the thought of taking an Uber or Lyft; I see the convenience of both services, but I just don’t feel comfortable being alone in a car with a stranger.  I also thought I was being lazy because the bus is a hassle, but it became clear to me that part of the reason I get anxious is because taking the bus means a greater chance that I will need Zelda.  Yesterday was a gorgeous, cloudy day with chances of rain, and although I love these kind of days, they can play havoc with my vision; even though the clouds darken the sky, if there is any light at all, I need to wear my hat and sunglasses, which makes things even darker.

RP is such a tricky disease.  I have night blindness and trouble seeing in dim light, but sunlight or any kind of bright light also blinds me, and hurts like hell.  So, on cloudy days, I am faced with the choice of my vision being lessened by dark glasses or going without them and suffering from any amount of glare.  I almost always choose the sunglasses, but my nerves get a bit jostled either way.

Yesterday, after far too much time given to agonizing, I decided to take the bus, even though I felt certain that Zelda would have to make an appearance.  I walked out into the deliciously chilly day and travelled the 2 blocks to the bus stop, keeping Z in her case.  I have lived in my neighborhood for a long time and have a, most likely false, sense of security when it comes to knowing the layout of the streets; in any case, I felt like I didn’t need Z to help me to the bus stop and I got their unscathed.

Although there is a bus that gets me within a mile of my Dad’s house,  I usually take 2 busses because of a frightening incident that happened not to long ago; you can read about it here. But, yesterday, I was running late and I knew the traffic would be horrendous, so when the first bus to arrive was the one I don’t need to transfer from, I got on.  My anxiety was now doubled; I was anxious about Zelda and watching everyone who got on the bus to make sure no one was particularly frightening.

Even though it was Halloween, the ride across town was pretty tame, and by the time I got to my stop, I felt confident that no psycho killers were going to follow me off the bus; I got off and started the mile walk to my Dad’s house.  It had started sprinkling while I was on the bus, so the ground was wet and the sky had gotten darker, but still I kept Z safely tucked away.  About 300 feet from the bus stop, I came to an underpass that I had to enter in order to cross the extremely busy street to get to my Dad’s neighborhood.  I hesitated, but only for a few seconds, then reached behind me to get Zelda.

This was exactly the kind of situation I had been waiting for; I looked into the darkness of that underpass and I knew I needed help.  I knew that having Zelda in that moment would alleviate my anxiety, and it did.  I zipped through the underpass, across the busy street, and into my Dad’s neighborhood, with Zelda leading the way.  I felt liberated, but more importantly, I felt confident and safe.

Revelations

 

*A note to new readers:  Welcome to Stories from the Edge of Blindness and thank you for reading!  I just wanted to let you know that when I refer to Zelda (or Z), I am not talking about a pet or a child, but about my white cane.

Sometimes, I am walking down the street, or more often, to the kitchen, and I have these revelations about my relationship to RP and Zelda and the whole blind thing; I suppose I am thinking about it all the time, but mostly with a great deal of confusion about why I am struggling so much with this particular part of my RP story. However, occasionally, these nuggets of realization will pop into my head and lead me to a little more clarity.

Yesterday, my Dad was driving me to the bus and he asked, basically, how much the cane was influencing my life and what benefit, if any, it provides.  All I could tell him was that I was still feeling unsure and having a lot of internal struggle, asking myself the same questions he had asked me.  I told him that Zelda definitely helps reduce my anxiety in crowded places, which is true, but I think I probably sounded more like I was trying to convince myself,  rather than believing it.  I told him that I was glad I have her for situations when I feel anxious or I know my remaining vision will be compromised: for example, if I forget to wear a hat on a day that starts out cloudy and becomes sunny; even with my huge sunglasses, if any sun pops through the gaps at the top or to the sides, I am completely blind and Z would probably come in handy in that circumstance.  My Dad said he is also glad that I have her.

I forgot a hat yesterday because Joe and I left early in the morning, before the sun had fully shown its face, and we were rushed to get the dogs to the vet, so when my Dad dropped me off, I thought I may have to use Z to get safely to the actual bus stop.  I didn’t end up using her, but I thought about it…….

Anyway, I digress. Back to my oh so profound (probably not) revelation.

I feel that if I choose to avail of the assistance of Zelda then I am choosing to be blind.  On a logical level, I know this is ridiculous.  RP isn’t my choice, blindness isn’t my choice, and I am already legally blind, but emotionally I have drawn a line that I can’t manage to cross.  I am fighting the reality of my disease with iron clad resolve, and I am pretty damn stubborn when it comes to fighting off reality. My petulant self says that I don’t want to be blind and I don’t want this stupid fucking disease, so I will deny it for as long as I possibly can.  The problem is, RP has no respect for lines, no matter how solid they appear to be.

RP isn’t the same from day-to-day; it can change in a second due to lighting or the slightest turn of the head.  Something can be right in front of me one minute and gone the next; this is why I need Zelda.  But, I have had years of practice dealing with the moment to moment changes; I am really good at hiding my blindness, until I’m not and I’m on the ground, bruised and broken and hating myself for having RP.

I imagine everyone must be tired of me and my writing about this struggle with Zelda; I am a bit sick of it myself, but it is a reality of RP that I think is important to write about honestly.  I am stuck and afraid and trying to navigate my way through this chapter in the best ways I can.  I think these little revelatory nuggets help me face the realities and complexities of my disease and bring me closer to accepting Zelda as a part of my independence rather than a co-conspirator to what keeps me captive.

 

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.

4 Years

Today is the 4th anniversary of my brother’s death.  He has been on my mind more than usual this week and I woke up this morning feeling like it must be impossible that he has been gone so long. I can’t believe that I am now the age he was when he died. Where have all the days gone? I miss him so much. I really could have used my big brother’s advice with the whole Zelda thing (Zelda is my white cane).

John(that’s my brother) was sick on and off from the age of 18 until his death at age 48.  He knew more than most what it meant to feel different and defeated, but he had a determination that I have rarely seen.  We weren’t close as kids; I was the one who swooped in and usurped his title of youngest child, and he had absolutely no use for me, but in the last years of his life we had truly become friends.

We both loved Harry Potter and saw almost all of the movies together.  While waiting in line to see “The Half Blood Prince”, a group in front of us kept growing; people coming into the line gradually to join the two girls who had been there from the beginning. John and I had been there for about 4 hours ( we were dedicated), and John was not happy about all the people arriving late and essentially cutting in line.  When the line finally started moving, the now pretty big group ahead of us had to gather their blankets and backpacks and purses, so John grabbed my hand and raced up to get ahead of them in line.  One of the girls had the nerve to call us out on it, so John turned around and told her that she had joined the line late and we had been there the whole time, so tough shit. She replied by saying that everyone one was doing it, and John said,” If everyone jumped off a cliff, would you do that?”.  It was a wonderfully old man kind of thing to say and I loved him for it.  I loved watching him stand up for us.  I wish he was here so we could reminisce about that day.

Maybe two or three years after my RP diagnosis, I was feeling sorry for myself, lonely and misunderstood, and I made a comment about how no one in my family could possibly relate to what it felt like or what I was going through.  Later that day, John came to sit with me at the dining room table and told me I had hurt his feelings by what I had said, because he understood.  He understood what is was like to feel loss, to feel afraid and different and alone.  I knew in that moment that neither of us were alone.  I learned in that moment what it meant to be brave. I saw in that moment how much John had been teaching me all along, about strength and kindness and honesty.

I am lucky that John was my big brother and so grateful that we became close and that I really got to know him, but I wish he was here so I could tell him how amazing he was and how much I miss him.

 

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?

Hands off the Wheel

A good friend of mine made a great recommendation regarding my blog; she pointed out that people new to my blog may not know that when I refer to Zelda(or Z), I am taking about my white cane. So, in future blog posts, if Zelda is part of the story,  I will make sure to add a note explaining who (what) she is.  Thank you to my friend – you know who you are and I love you!

So, yeah, Zelda is going to be part of this particular post.  You may be thinking, ” oh god, not that bitch Zelda again”, but, unfortunately, Z isn’t going anywhere, no matter how hard I try to get rid of her.

I have been treating Zelda deplorably.  I have ignored her, shunned her and concealed her on a crowded hook.  If I don’t see her, I don’t have to think about her; and if I don’t have to think about her, I can pretend that I can see just like most other people. I am really good at the avoiding and pretending thing.

When I was learning to drive – the second time; a few years after two accidents and a ticket for failing to yield to a pedestrian in a crosswalk (no one was injured) – my Dad took me to an abandoned parking lot to test a theory.  He asked me to just drive around as if I were searching for a parking space and then he randomly shouted out things like: OH MY GOD, A BABY IN THE ROAD or LOOK OUT FOR THOSE NUNS; every single time, my response was to take my hands off the wheel and look away, as if I wasn’t really driving the car.  My instinct definitely veered in the flight direction and I obviously, in some seriously twisted part of my brain, figured if I ignored it, it wasn’t happening.

Of course, it turned out that my accidents were, in large part, due to RP and my limited peripheral vision, but at the time I had no idea that I had RP and that I wasn’t seeing things that fully sighted people would see.  That being said, I still took my hands off the wheel.

I wish I could say that I am one of those people who sees a challenge and jumps in with fearless determination; I am not.  I am, however, incredibly proficient at avoiding the things I can do to make challenging situations a little easier.  I eventually come around to face reality, but then I close my eyes and turn away like an insolent child; I don’t want this fucking problem, disease, etc., and I am not going to deal with it.  I have been doing it with RP for years, so I was bound to treat Zelda with the same dismissive attitude.

As I have said before, and will say a million times, RP is a total mind fuck.  It is purgatory.  It is the gray area covered in fog.  It is a disease that begs to be denied, especially by those who are well versed in denial.  But, RP is pesky and persistent and pops up often to remind me that I am defective.  No matter how much I want to, RP won’t let me take my hands off the wheel.

It doesn’t matter how many coats and hats I pile up on the hook over Zelda, she is in my head.  I have to find a way to see her as an ally, but I am struggling.  I feel the weight of her even when I don’t have her with me.  I went into my mobility training with a positive attitude, but discovered that this is, without question, the most difficult challenge I have faced in my RP journey.

I am having trouble fending off my insolence.  I keep screaming in my head that I don’t want RP and I don’t want the fucking cane, kicking at the reality of my disease and trying to reject it; but, I don’t have a choice, RP isn’t going anywhere.  If I don’t find a way to see Zelda as beneficial, one day, I am going to get seriously hurt.  The thing is, I can’t imagine it hurting more than it already does.

 

 

 

Being a Writer

 

While reading a friend’s blog this morning (The Incurable Dreamer), I found myself thinking about what it means to be a writer.  She is a brilliant writer and has chosen to dedicate herself to it, which makes me happy for her, and for me, and everyone who gets to read her stuff. She gets what it means to be a writer.

I come from a family that is overflowing with achievement; there are doctors, lawyers, city planners and politicians, and then there is me.  Whenever I meet a friend of my parents (invariably another doctor), they always get excited and ask me if I am the “doctor daughter”, and then look uncomfortable and slightly disappointed when I tell them that I am a writer; when I tell them I write poetry, they can’t get away fast enough.  I don’t fit into the perfect package that my family represents and that makes people uncomfortable; and, ok,  having an abundance of tattoos may also factor into the discomfort thing a tiny bit, but I kind of love that.

Don’t get me wrong, my family is supportive of my writing (not so much with the tattoos), but for so long, I felt like being a writer wasn’t a viable thing because I hadn’t gone to school to study how to be a writer and because I wasn’t getting published in all the top magazines; I had no clear signs of accomplishment and that meant I was a big pile of nothing sitting off in the corner while my accomplished siblings were being praised for all of their hard work, as if I could never understand what it means to work hard. My parents and my brothers and sisters are all super amazing people who do work really hard and I am proud of them, but I am not nothing. I am a writer.  I am a writer; but what does that mean? It took me a long time to figure it out and to be able to talk about it with confidence.

For years, I struggled with the question of whether or not I was actually a writer and doubted myself whenever I told people that I was. I have written everything from poetry to one-act plays, but until recently my writing was sporadic.  I was a writer in moniker and desire, but not in practice. I wasn’t writing.

I didn’t believe I had the credentials to be a writer, so I went about trying to find a real job.  I found a thousand real jobs; some I liked, some I hated, but none made me feel fulfilled, or like I was doing the thing I was meant to do.  I knew, in my heart, that I was a writer.  I had been a writer since I was 6 years old when I wrote a Thanksgiving story about a turkey who commits suicide; it was called “The Sad Turkey”, and it was about a turkey who decided to commit suicide because he knew he would be killed for some fancy Thanksgiving dinner.  Pretty imaginative for a 6-year-old, right?

When I stopped working a regular job in 2009, I had big plans. I was going to write a memoir and get published; instead, I made a lot of popcorn and watched a lot of T.V.  When I started this blog, I was certain that it would be the answer to my writing woes; it would help me get my memoir done and get me published.  But, I barely posted; months went by and I didn’t go near the computer because I felt guilty for not writing blog posts.

I know now that I needed the time to adjust to the reason that I had stopped working a regular job; I had to give myself time to come to terms with the fact that RP had started to affect my life in more impactful ways and I wasn’t ready to write about it on a regular basis.  I had been given a gift of sorts, but I wasn’t ready to open it up.

Years went by and I still wasn’t writing regularly, even though I know that when I am writing I feel full and satisfied.  I had stopped writing poetry because I felt that it would never be lucrative and I really had no business calling myself a poet given that I have no formal education in writing.  The problem was that poetry is my first love, as a writer.  Poetry is where my pulse lives and it is what inspires me.

A few years ago, I decided to stop stressing about the blog and start writing poetry again. I felt inspired and satiated.  I wrote tons of poems and edited a bunch of old pieces; I got motivated and started to enter contests and submit my work.  I returned to the blog with a new energy and I dedicated myself to writing.

Degrees and  publication credits don’t make me a writer.  I am a writer simply because I write.  I have discovered that, for me, being a writer means doing the writing, fulfilling that part of myself that only writing can fulfill ; it is reaching into your darkness and your light, being brave enough to face whatever you may find there, and sharing those discoveries. Being a writer is hard work and often lonely work, but it is the work that speaks to me.

I am not nothing.  I am a writer.

 

Guilt, Safety and More Blind Lady Stuff

So, I am walking home from the grocery store a few days ago, sans Zelda, and feeling my usual combination of freedom, guilt and anxiety.  I was moving pretty gracefully(I think) over all the Hollywood debris and I came to a small intersection where the light was red, which seriously interrupted my groove.  I am doing my usual scanning of my surroundings thing that RP has helped me become good at, and I see a guy talking to the gate just around the corner.

He is clearly enamored with this gate, and it is pretty nice as gates go – slick black iron with wide, solid and shiny bars- but his feelings are clearly going way beyond admiration. His expression is coy and flirtatious and he is speaking in a whisper;  he and the gate are clearly sharing something intimate.  I try to ignore him, but it is hard not to notice a love like that. His eyes are ablaze with passion, but I can’t see his hands. The light is taking forever to turn green.

Just as I am looking away, he looks up and sees me.  I guess his love for the gate is fleeting because now he is giving me the flirty eyes; at least it isn’t rage this time.  He grins at me and starts to move away from the gate.  He comes around the corner and I realize why I couldn’t see his hands; they are in his pants.  His hands are moving around inside his filthy, tattered, barely covering his ass pants; you get the picture.

He sashays toward me, eyes wild and teeth alight, and then he notices the gate again and walks right past me.  But, I can feel him behind me, looking from me to the gate and back again.  I am sure he thinks I can see him, but I only hear and sense that he is still there. The light turns green and I am out of there, leaving him and the gate in their rapture.

As I walk the two last blocks to my apartment, something new occurs to me regarding Zelda and my safety.  I feel guilty every time I leave the house without Z, and burdened whenever I have her with me, but I have always thought it is safer when I have her; now I am not so sure.  Perhaps, it depends on the neighborhood.  I have had some pretty freaky experiences in my neighborhood and more truly insane people seem to be taking up residence in the past few months; it seems to me that it might be safer if they think I can see them coming rather than knowing I can’t.

Clearly I am still working out the whole Zelda thing and I know my feelings about her will change as my vision changes, but I have to consider my surroundings and what feels safest to me.  For now, I prefer that the residents of the tent towns that are popping up all over the Hollywood sidewalks, don’t know that I am blind.

 

 

 

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