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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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Retinitis Pigmentosa

Out of Ink

I touched briefly yesterday on the idea of trying to create balance in my life, shaping the time I have in ways that let light in from all directions.  I have never been good at this, but if I don’t figure out a way to make it happen, I am afraid the walls I build will become so thick, I will be trapped in the gaze of a single light that pushes possibility and experience into complete darkness.

I have written in the past about stepping back from my blog and Word Press, with the idea of detaching myself completely in order to focus on my poetry, enabling myself to return with renewed energy.  This doesn’t work.  I have a history of immersing myself in things, healthy and unhealthy, to the point of neglect.  Whenever I step away, I always return and pick up the same bad habits.  If I am blogging, my poetry suffers, and if I am working on my poetry, I feel like I don’t have any energy for Word Press.  This is where the balance thing comes in.

I have met so many incredible people in this virtual world; people who inspire me, teach me, push me and raise me up.  I feel grateful for this experience every day.  I know how lucky I am to be a part of something so special.  But, I have allowed myself to get swallowed up by it.  That is what I do.  I need to figure out a way to fit things together, make room for all the pieces.

I am so disconnected from the roots of my life. This is a life long pattern.  I am all in or all out. I ignore the whole picture of my life, allow myself to get invested in just one color.  It is a web I must unweave.  I have stopped taking care of my body and my home and my husband.  I am off kilter and cant’ feel the blood beneath my skin.  I am afraid that if I don’t create this balance I so desperately need, I will wake up one day having completely erased who I am.

I am not leaving Word Press; that would be the all in or all out thing again. I am just re-assessing,  figuring out how to see all the pieces of my life and how to connect them in a way that is healthy for me.  I have to invest in myself or the neglect is going to shatter me.

I am determined to find space for everything, to stop giving myself over to just one thing, whatever it might be. I have so often loved something and lost myself in the process, and I need to make the changes so I can discover what this whole balance thing feels like .

I feel a little strange writing this.  Who gives a shit if I stay or go.  But I suppose this is my way of saying that although I won’t be commenting like I have or engaging in the same ways, I am still reading and grateful for all of the many talented writers I have met here.

I will be around, just not as much.   I need to look at the whole path.  I need to blog and hike and write poetry and go out with my husband and see my family and my friends.  I need to live, or I will find myself out of ink, with nothing to write about.  I need to look up every so often and remember that a whole life is there if I can find the courage to see it and mold it into what feels right for me.  I need to find a way to believe that I matter and that my life has value, even when I stumble at every turn and can’t be the person who is always there for everyone else.  I need to be ok with sometimes being there just for me.

 

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Breaking into 50

The rain has been with us for days, washing debris from the sky and the pavement, leaking in through windows, trying to trick us into feeling unsettled. But, the rain has always made me feel safe, contemplative.

This year I will be 50.  I may write about it….a lot.  I might just push it into the dirt after this post, but that seems unlikely. I honestly find it slightly unbelievable.   I want to say it is because I feel 30, but I don’t.  I have brutalized my body for so many of my 50 years, and it holds the scars, reminds me how time both escapes and binds.  I am told that I don’t look 50, but grief has left lines on my face and darkness beneath my eyes. It has aged me, but also strengthened me.  I find the idea of 50 unbelievable, not because I crave youth, but because there is so much that has been chipped away, it seems impossible for so many years to have passed.

I often write about being broken, as if I am something that needs to be fixed, as if the pieces of myself that have been lost are meant to be recovered.  I don’t think they are.  I have focused for so long on the idea of wholeness, but as I approach 50, I begin to realize that I don’t need to piece myself back together or continue to look for the shapes of years I can no longer see clearly.  I don’t need to be fixed to be whole or strong.   I don’t want to be unbreakable.  I have strength because I am broken.

I have been staring over a precipice for so long, searching for who I was, or who I believed I should have been, but the truth is, I have no idea what that person looks like. It is time I stop trying to find her.  I know that I need to make changes in my life, and in some ways I hope I always will.  It is in change that growth is experienced.  I know there are burdens I will always carry; blindness and depression and loss.  But I know that I can, because I have for so many years.  It has given me strength.

Now, as 50 comes closer, I want to feel balance, expand my focus, learn to carve out time for myself as well as others. I want to honor the love I have for writing, but I also need to give energy to other parts of my life. I want to live as honestly as I can.  I will have dark days.  It is part of who I am.  I will have days flooded in light.  It is part of who I am.  I will feel despair without trying to erase it.  I will feel joy and know it doesn’t have to be fleeting.  I will be messy and ugly and angry.  I will soar and I will crash.  I am turning 50 and I have endured every wound, every fall and scrape that have altered my life.  I am broken and I have earned it.  I am proud of it.  It is in the breaking that I have learned to stand, to love and to see.

Best Eye Appointment Ever

The title of this post may be a tad misleading.  The best eye appointment would either be Dr. Sarraf telling me it has all been a dream and I don’t actually have RP, or Dr. Sarraf giving me a pill that would cure the RP and completely restore my sight.  Given the fact that those two things are pretty unlikely……it was definitely the best eye appointment ever.

The first best part was that the whole appointment was (almost) like clockwork.  I was only there for 3 hours, which  is actually a reasonable amount of time given my past appointment times.  I wish I could say that it was also pain free, but from the minute the tech was administering the drops, it hurt like hell.  The first pain comes when she asks me to look up at the ceiling, directly into the huge fluorescent lighting fixture, without blinking, so she can put three sets of drops in my eyes.  3 seconds looking into a light like that is excruciating; hell, just being in a fluorescent lighted room is painful.  It may not sound all that great so far, but, I was called into see the tech only about an hour after my arrival, and after the drops took effect, ushered pretty quickly into the imaging room to get scans and photos taken.

After another short wait, I was called in by the intern, who is lovely and was there last year as well.  We chatted a bit about eye stuff, and then he examined my eyes with a light so bright, it felt like a layer of the inside of my eye was being burned. OUCH.  Then, he asked if a student from France could have a look.  With a smile, I agreed.  I wouldn’t want to deprive someone of a learning opportunity.  But, the students always look longer, make the light brighter and get so close that the casing around the light sometimes touches my face,  as if that will give them a better look.  It’s like the part of my eye that was burned is now being scraped with a hot blade.  I am pretty tough, but I actually pulled away from her at one point because it hurt so much.  I am making her sound like a sadist, but she was actually very nice.  After the student had her lengthy peek at my retinas, the intern brought up ERG and suggested I may need to have another one.  So soon?  I felt like I was in the ERG torture chamber like a week ago.  That shit is traumatizing.  I told the intern, in a joking way, that the ERG’s seriously suck.  He laughed, agreed, explained the importance, apologized, and said he would talk to Dr. Sarraf.  Then it was back to the waiting room to wait for the final exam with Dr. Sarraf.

This may not be sounding like such a great appointment, but I promise, it really was the best appointment ever.

So, I wait a bit longer, get called back into the room, and listen to Dr. Sarraf talking to some other patients for about half and hour.  I am not always an eves dropper, but remember, I can’t use my eyes, so listening to other people’s private conversations is about my only option while I wait.  After not too long, Dr.  Sarraf comes in and is polite and positive, as always.  Then he examines my eyes.  FUCKING OUCH!!!!  He actually dimmed his light a bit (I really should find out the proper name for those lights they carry around) after the first eye; I think he could tell I was in pain.

So he finishes the exam and talks about the decrease in my vision between 2012 and 2016 and says he wants me to have a visual field test in six months to see if my field has constricted further since 2016 ( it most likely has).  He tells me that the RP has still not started to affect my central vision, and that it may never, which is amazing news.  Then he says I don’t have to have an ERG, which is smashing news…..and the really good bit, the part that makes it the best appointment ever.  He referred me for genetic testing!

Last year, he said he really didn’t see any value in my having genetic testing, but a lot can change with science in a year.  Apparently there is a treatment that is being administered to children with RP and it is having some great results, and although there is no treatment for someone like me yet, he said there is a lot coming down the pipeline and he thinks the genetic testing would be of great value at this point.  I was over the moon.  This is why I go through the pain every year, why I make sure I remain his patient.

I am super excited, not because I think there will be a treatment for me tomorrow or even in a year, but because having the genetic testing puts me on the radar.  Hopefully, I will also be able to learn a lot more about my specific strain of RP and what it looks like from a genetic standpoint.  I just kept telling Dr. Sarraf how exciting it all was and how cool the work with the kids was and how I was completely thrilled; I may have come across a bit nuts, but hopefully I was memorable!!!!

January Visual Verse Contribution

The January Visual Verse challenge is up and running, in some very interesting directions.  You can submit until the 15th!!!

My contribution came out today.  If you are interested, you can read it here.

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.

The doctor who diagnosed my condition was less than pleasant (you can read about him in my poem, Diagnosis), but the doctor who took on his patients when he left UCLA, and who has been my specialist for the past 16 years, is absolutely wonderful!  Although it is never fun to have my eyes poked and assaulted by lights, his kindness always makes it a bit less harrowing.

If I don’t have to have an ERG, which I thankfully have only had to have twice (you can read about my most recent experience here) the day is usually pretty much the same every year.  I check into the clinic and wait about 20 minutes or so, then I get called in for the first phase of the appointment.  This is pretty standard, I think, for most ophthalmology visits, regardless of your condition, and my doctor and his partner are specialists and researchers of a number of degenerative retinal diseases, not just RP.  Anyway, I get called in and a tech checks my glasses and determines what I can see while wearing my glasses, then does a rudimentary peripheral vision test, consisting of asking when I can see her (it has always been a woman) two fingers as she brings them in from all of the outer edges of what should be my visual field.  It is after this test that I get my first, “oh fuck” feeling of the day.  It is the first big indicator of why I am there, which leads to feelings of self-pity and thoughts like, “I really don’t want to have this crazy disease”.  I try not to feel self pity, and most of the time I don’t, but you gotta cut me a little slack on the actual day at the eye clinic.  The last two things in this phase are asking if my vision has changed, to which I always reply either maybe or I don’t know, and then come the drops.  Lots of drops.  Drops to numb my eyes and at least two sets to dilate my eyes and sometimes contrast drops.  Then I am asked to return to the waiting room.

For most people, having their eyes dilated is a bit unpleasant, perhaps results in a couple of hours of increased sensitivity to the light, maybe they have to wear sunglasses when they normally wouldn’t, but it doesn’t put their eyes out of commission for the whole day.  At my stage of RP, having my eyes dilated is incredibly painful and leaves my eyes completely useless for the entire day.  After my initial diagnosis, my eyes stayed dilated for almost an entire week, but that is another story.  On a normal day, my sensitivity to light is so extreme, that if I don’t wear sunglasses, I experience what most people feel after having their eyes dilated.  When I get the dilation drops, it is so painful that I can’t look at anything without tears coming to my eyes, even through the darkest lenses.  So, not fun.

Anyway, back in the waiting room, drops doing their evil job, I wait. And wait.  And wait, to see the doctor.  At the least I have waited an  hour, at the most it has been 3.  These are hours when I can’t read or check my phone or look at anything.  So, I listen. My doctor is lovely and very gentle with his patients, many of whom are elderly and have age related macular degeneration, and who also require him to speak a bit louder than normal.  I listen to how patient and caring he is, how willing he is to explain things slowly and multiple times.  I listen to people in the waiting room, of all ages and genders and races, some frustrated, some frightened.  I listen to parents comforting children and patients telling loved ones about how hard it is living with blindness.  I listen to receptionists placating difficult personalities.  I listen for my name to be called.

I am ushered into a dim room; at least it is usually dim. Last year, I had to ask to have the lights dimmed, and I won’t deny feeling a bit pissed off.  Shouldn’t they know how painful the light is for people like me? Don’t they deal with this every day?  I got over it pretty quickly.  When I finally get into the exam room, I usually wait at least another 30 minutes for the student to come in.  There is always a student; UCLA is a teaching hospital.  The student does the first of the in-depth exams of the day, which consists of the brightest light I have ever seen, being shined directly into one eye at a time, while I am asked to look right, left, up and down.  The student will usually tell me a bit about RP and that I also have cataracts etc.  I know all of this, but they are learning, so I just smile and say thank you.  Then the student leaves and tells me Dr.  Sarraf will be with me soon.  It is never soon.  It may be up to another hour before he gets to me.  He is a busy guy.

When he finally arrives, Dr. Sarraf does another extensive examination of my retinas.  He always says he is sorry, that he knows it hurts.  Some years he tells me there is no change, others he tells me there is a slight change.  RP moves slowly and in my case very slowly, which is a good thing.  Then he tells me there are just a few more tests I need to have and says he will see me in a year.

Then it’s back to the waiting room.  And I wait.  And wait.  In more pain that before my last stint in the waiting room.  Still unable to look at anything.  I may wait another hour or more for the tests, which I will write about (along with the results) on Tuesday, when the pain will hopefully have subsided.

The Final Hunt (FTS 2019 #2)

It was an honor and a blast to be a part of this very cool exercise, with so many fantastic writers!

The Haunted Wordsmith

the final hunt

The Final Hunt

Anne and Gladys waved as the men left for their hunt. When they were out of sight, they both laughed knowing full well that none would have the heart to really shoot anything. They liked a boy’s day out as much as they liked a girl’s day in.

“So,” Fred said as they passed the gate into his family’s hunting grounds. “What do you think the girls are up to today?”

Alec laughed. “Talking about us, what else?”

Sam nodded. “Yep.”

As they walked through the fields into the tree line, the dogs’ ears’ picked up. Boy whimpered and cowered close to Fred’s legs. Toby’s fur stood on edge as he stared into the woods and growled.

“Easy there,” Alec said, trying to calm him.

Sam kneeled and unzipped his gun as quietly as possible. Suddenly, both dogs were on alert as a small, bespectacled man stepped…

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I Become the Noise

In a split second, the weight of my mind can become unbearable.  The feeling of my skin disgusts me.  I remember everything that makes me ugly, all the anger and how I have hurt people.  I start thinking about everything I have lost.  I weave myself into the fabric of lies I believe in, as if they are prophecy.  I become the nightmare. I become the noise.

Why does it still surprise me how easily, at 49, I can go from feeling good about something that I have achieved, feeling like I might actually not be a total failure,  to feeling small and worthless, hating myself so fiercely I can barely breathe?

I started the year feeling pretty good, dare I say even a bit positive, about my writing and what I may be able to achieve in the future.  But, it all turned to muck when my sister sang one song, so beautifully, while looking like a model doing it.  When she sings, or talks or walks, or just stands on the pavement, the world stops and the light shines only on her.  She was meant for it. She glows beneath it.  I just seem to fall again and again into the dirt, as if I should be hidden away, disgusting and sad, something to be ashamed of.

When we were children, my Mom had special names for me and my older sister.  She was pearl and I was plumb.  That pretty much sums up who we have been all of our lives.  She is something lovely and precious, protected by a shell.  I am a fruit that when dried, helps people shit.  She is pristine and special. I am crap. Living in the shadow of perfection, when you are composed of scraps and garbage, is impossible and so incredibly painful.  Unfortunately, I made the mistake of blaming her, for far too many years.

I want so much to be able to look at my sister and simply feel proud, not be so fucking narcissistic that her success leads me to feeling worthless.  And as far as her being beautiful and smart and musically talented (and the list goes on), well, that is all just genetic luck.  She got all the good stuff from my parents, but that isn’t her fault.  It is just how it turned out.  I love my sister and I am incredibly proud of her;  she has had an adventurous and successful life in so many ways, but when I think about it, I turn a scope onto all the ways my own life has been an undertaking of failure.  It isn’t fair to her.  I haven’t been fair to her.  Just another of my failings. But, I don’t blame her.

My thoughts are in a loop and make no sense.

Today I started thinking about things I have loved to do and realized that so many of those things are no longer a part of my life.  I remember spending hours, sometimes an entire day, on the couch, reading; it was one of my favorite things to do.  Now, I don’t even have a couch I can lie down on, and even if I did, the four animals I share space with would never allow it.  I used to love going to the movies in the afternoon when the theaters were almost empty.  I haven’t been to a movie theater in years.  Money and time always seem to be on short supply.  Probably something of my own design to keep me wrapped up in depression. I remember loving to drive to beautiful hiking spots, just me and music and trees.  I loved leaving the city and the noise behind.    I used to love having a nap when I was so exhausted my body hurt.  But, I can’t nap.  There is too much noise.  I am so tired.

I have been thinking about noise, feeling so repelled by it.  I feel suffocated by the sounds on my block, the screams that have been burned into the pavement with rage and permanence. I feel battered by shouting and raving and barking and greed.  I am surrounded by filth, afraid to take a step, wanting only to stay inside, but even inside, there is no space that feels comfortable or quiet.

How is it that in the morning I can snatch up glimmers of hope, while the city sleeps, but by afternoon, I am shackled to the repetitious brutality of my own mind?  How is it that I breathe when I was never meant to?  How is it that tomorrow, I will rise from bed and still hope, still believe that one day it can get better?

I am not looking to be told that my mind is full of lies or that I am somehow not the piece of shit I believe myself to be.  I am not looking for reassurance that I can be something different or better, if only I try.  I am not looking outward…..perhaps that is the problem.  But for now, in this moment on this afternoon, I need to simply share the words that live in the confines of my mind.  No matter how fucked up they may seem.

 

An Unpopular View

I was going to work on my newest venture of writing fiction (thanks to my wonderful friend and mentor, Bryan) and send out some poetry submissions this morning, but then I entered the WP world and read a few different posts, from others in the Blind/VI community, about the  #Birdbox challenge, and I felt compelled to respond with a post of my own.

I must begin by saying that I haven’t seen The Birdbox or any of the videos of the #Birdbox challenge, so you may read this post and say to yourself,” jesus Susan, do some fucking research before you actually write a post”….but what can I say, I am a risk taker and honestly, willing to rattle some feathers on this specific topic.  That said…..

My understanding is that The Birdbox is about a woman and two children who are forced to remain blindfolded to stave off the attacks of monsters and ultimately stay alive.  The challenge, as I have read, is something along the lines of putting on a blindfold and attempting to do anything from basic tasks to potentially dangerous undertakings.  This all seems pretty foolish to me, but doesn’t strike me as having anything to do with being blind, or trying to understand what it’s like to be blind.  It sounds like a gimmick that was derived from a movie made purely to entertain (if that’s your thing).  Please don’t hesitate to correct me on any of this, if I have missed the mark.

I feel it is important for me to say that I am not a spokesperson for the blind community; I am just a blind woman with some, most likely, unpopular opinions.  I find that my views often seem to be in opposition to many of those that I read from other blind and visually impaired people.  I understand the importance of education and debunking stereotypes, especially regarding the idea that blind people are helpless, but you won’t hear me joining in the outcry against blindness as something to fear.  Blindness scares the crap out of me.  This is just my truth, but it has been so since the day I was told I was going blind.  Before my RP diagnosis, I was actually less afraid because blindness wasn’t something that had even come close to touching my life.  When it did, you better believe I was scared.  I still am.  But I am not helpless and I am not weak.

In regard to the blindfold challenges (this bird box thing is not the first) and the question of these challenges perpetuating the stereotypes of the helplessness and fear of blind people, I think hearing about the experiences of the sighted people who participate in the challenges is just as important as hearing the opinions of those of us who are blind/visually impaired.  Talking specifically about the Birdbox challenge, I wonder if the sighted participants actually think being blindfolded and being blind are the same thing?  Maybe we aren’t giving them enough credit.

As far as exercises of blindfolding sighted people to give them a small idea of how challenging it can feel to be blind, I won’t be one of those rallying against it.  For those of you who have read my blog for a while, you may remember a few posts I wrote about being blindfolded for some of my O&M lessons, as an aid to learn how to better use Zelda (my white cane).  If O&M instructors are using blindfolding as a tool for teaching blind and visually impaired people, the use of blindfolds to educate sighted people doesn’t seem like something unequivocally damaging to me.

Will being blindfolded give a sighted person the exact experience of being blind?  Of course not.  Is it a terrible thing to give a sighted person an idea of how scary it can be to be blind or visually impaired?  I don’t think so.

My first experience of one of these blindfold challenges was through a video posted by an English poet named Dave Steele, who has RP.  His wife was blindfolded and walked a block with his guide dog, Christopher.  When she removed the blindfold, she was crying and said that for the first time, she felt like she had at least a small idea of how hard it must be for her husband, how challenging it must be to adapt to his ever-changing vision, to blindness,  and how hard it must be to learn how to depend on aids like a cane or a guide dog.  My take was that the feelings she felt from the blindfold exercise were the kind she couldn’t get from reading about his experiences, and this is a man who writes almost exclusively about RP.

Perhaps my view of these challenges isn’t negative because it was built from a positive foundation, from the reaction of a sighted person, rather than the opinion of a blind/VI person.  Perhaps I am totally full of shit and about to piss off the entire blind community.  I hope not, but I feel it is important to offer varying opinions.  I welcome comments of any kind on this post.  I just want to keep learning and understanding.  I Just want the conversation to stay vital and alive.

 

 

The Opiate Magazine

I am thrilled to have a poem in The Opiate Magazine today.  3 more of my poems have been accepted for their next print issue and I am over the moon.  My huge thanks to editor, Genna Rivieccio!

If you would like to read my poem, you can do so here.

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